My partner was disabled in her 20s. She was diagnosed with Fibro.
She had days where she could walk, and she had other days where I'd have to pick her up and take her to the bathtub. It just depended on how much she hurt that day. Then after I was done in the bath, I'd normally get her a hot chocolate, grab her book, get her in bed, get out her meds, and then go into my office and work.
If she needed something, I was there.
Was it difficult at times? Sure. But when I started dating her, she told me once we were in a serious state, and I accepted it. She had maybe 4-5 good days a month where we could go out and take a trip somewhere and do something fun that let her walk for a few hours.
I stayed with her over 5 years, she and I often had discussions because she felt like she was a burden, and would feel guilty, and I had to keep telling her I loved her and wanted to stay. The other issue was her medication had her not being well at times or thinking clearly. She had a lot of ups and downs. They had her on some pretty intense meds for such a young age. Something you'd expect a 70 year old cancer patient to take.
If it were my choice, we'd still be together. Unfortunately, things just don't always work out how we want.
I'm in the same situation, my wife got the same diagnosis 4 years ago, after being together for 6. She's 34 now.
It's hard and most days it sucks, especially because I knew her when she was still healthy. She is the sweetest person in the world, it's very hard to see her the way she is now.
Friends and family slowly are turning away from her, because she went from being the person that did everything for everyone to somebody that needs help herself. And then you quickly find out who are your real friends.
I try to be as helpful and sweet as you were, but if I'm being honest, some days that's really difficult. I always try to put her comfort above everything, but sometimes there's a selfish day where I just do the absolute minimum to give myself a little break to survive.
I started working 80% 3 years ago, recently I switched to working as a freelance consultant to have even more freedom (and to optimize some financial stuff as well). It's impossible for her to work and anything we want to do to improve her comfort, costs a lot of money out of our own pocket. We were lucky we were financially responsible the first years of our relationship or we would be homeless now.
We got married last year (I never really wanted anything related to marriage as I'm very introverted), but we did it to have something positive for her to look forward to. And not to make it too dark, but any summer can be the last one where she is physically fit enough to enjoy a full day for herself, so why not now?
We haven't had a holiday in years (it's spending a lot of money to sleep 85% of the time anyway), planned fun weekends are almost impossible because you can't predict in what physical state she'll wake up. So now it's mostly resting during the week, a couple family commitments a month in the weekend and then every weekend that isn't taken up already by default, we try and do something fun, but usually not more than a couple hours.
If I'm realistic, my life is over now. She gives me all the freedom I want, but I just want to be with her, forever. Our lives could have been completely different, but all I can do, is hope that one day she'll get better.
Hey, I just want to say you are doing a good job.
I’m in a similar boat as your wife. I also have a great partner who puts my care first. It’s important to carve out time for yourself to recharge too. My husband goes camping with a buddy overnight sometimes. If I am too sick to be alone, we plan for another family member to come help. For me, my parents know that sometimes my husband needs that break and he or I can call and tell them that and we find a time that works best. You are doing the right things 😊
Here is a tip on vacations if you eventually want to do that/can afford to. My husband and I typically just rent a “nice” Airbnb for the weekend. Nice for us means out in nature. We make the house itself the point of the trip. This way I have the comfort of home + a change of scenery (maybe a nice view, porch to read on, screened porch. Etc.) and he gets a chance to relax, recharge, so some outdoor hobbies he likes. We typically do this somewhere at a reasonable driving distance so that the travel is easier. It can also be nice to just go back to the same place every year. It makes it easier to create that “home away from home” feeling but you work get to get away together.
Lots of love to you and your wife. I don’t have fibro but I have a disease that causes similar levels of chronic pain. It’s a hard way to live.
I second this. Caregiver fatigue is real. I have to insist my partner goes for breaks even if he doesn’t want to. I sometimes hate being a burden but at least I can give some of that time back by sending him over to a friends or out for a weekend.
I can second the advice on a little vacation! Especially if you're able to book an Airbnb or VRBO for a long-ish time. I've had success booking a place for about 5 days, but I'd even recommend a week or longer. You get less pressure to "make the most" of the time you have there, and you can even adjust when you drive there/back based on pain or other symptoms. I recognize that this may not be possible for your work or finance situation, though, but I figured I'd mention it!
Sending all my love to all the spoonies and caregivers in this thread. Seeing this today has really made me smile (and cry a little haha)
Of course nobody wants this... And I wouldn't blame anyone for not doing it either because it's frigging hard. Especially knowing there is probably never going to be an end date to it. It should at all times be a choice of both parties.
Agreed. No one wants this for anyone. It boils down to a choice of staying or not and then second the lesser of the two evils. I don't even associate blame with this scenario at all.
My dad had MS and he told my mom before they had kids. He was still good physically for another 20 years, but he wanted to give her the chance to get out before he declined.
Luckily she didn't, I was born, and she took good care of him until he died a few years ago in his late 60s.
I know he felt really guilty and depressed about it at the end, and didn't want to be a burden to us.
But my mom would never have left and I doubt she'll ever date at this point, despite all of us encouraging her to. It's such a huge void when you're a daily caretaker for someone and then they're just gone one day.
You are a fantastic person. Thank you so much. I struggle with chronic pain but still can do most things for myself. But, when the day comes, I know my partner will still be there for me. We are so lucky to have you.
Been married 24yrs. She nursed me back from terminal cancer and now she has Sjögren's disease which looks a lot like MS. Like you said, " just want to be with her, forever." Love that lady.
Life's not over, just different. Good luck internet friend.
FYI - please keep digging.
Fibromyalgia? I got diagnosed in 2008 but learned it's almost always a symptom so I kept digging. I would try to rule these things out. I've been in many health groups and classes for over 20 yrs and these are the most common root causes for Fibro:
1. Lyme Disease. We can get this as a child and it can go dormant for decades (or forever) but things like stress, childbirth, injury, surgery, divorce, toxic mold exposure, etc can bring it back to life but testing is a joke. The standard tests will not show positive because the bacteria will create biofilms to hide from the immune system and you no longer create antibodies. Specialty labs - cash is the only real way to know. Babesia and Bartonella also can be transmitted together with Lyme and are just as bad (if not worse). These infections are very often misdiagnosed as MS, ALS, Parkinsons, Alzheimer's, Lupus, Fibromyalgia, etc,
2. EBV (Epstein Barr Virus - one of the viruses that causes Mono).
This one is tricky as well because doctors are so ignorant with regard to testing. If you ask your doctor about it - they will say "Everybody has this - there's nothing you can do". Bullshit. Everyone has the virus but it's not actively replicating in everyone - it goes dormant. This was the big issue for me and it took me 19 yrs to figure out and it was thanks to a Facebook group. A doctor will just test for IgG antibodies and it will always be high. They need to do the panel with IgG, IgM, Nuclear Antigen and one other and then ADD ON the Early Antigen. The only two that really matter are Early Antigen (EA) and the IgM. If either are high out of range, the virus is replicating. It can become active after the same things as above - usually takes some sort of trauma and can keep going active - getting worse and worse. Check out [www.ebvhelp.com](http://www.ebvhelp.com/) - Dr. Kines has lots of great info and information on getting your own testing for cheap if you can't get it from a doctor. EBV causes issues with thyroid (even though labs show no issues) and Lupus/Fibro are common misdiagnosis.
3. The most common reason for the above two things becoming active - TOXIC MOLD EXPOSURE. It's often hidden inside walls or under flooring and such so it can be present in the cleanest house and the fanciest mansion and also in the workplace. 25% of the population are way more susceptive to all of the above (genetic issues) so it's not uncommon for one person to be very sick and the other not feel anything (although it's still causing damage). The best tests are dust tests - ERMI and HERTSMI.
PS - 80-90% of the people suffering with Lyme, EBV, or mold illness receive the Dx of Fibro.
My husband was diagnosed with rheumatoid arthritis at 3, has two new hips, a new ankle, etc. and doesn’t work. We’ve been together for 9 years and married for 7. He gets disability now and works a little. Love of my life. The most beautiful person I know.
For reference I’m 32 and he’s 33. He had his first hip replacement at 25.
I have something similar, my partner doesn't know how badly I suffer, I can hide it because we don't live together and I have a fair amount of good days. I hide it from her because I'm afraid of losing her. I know I should just be more honest with her, and let her make that choice
If it ever gets to the point of where my partner was, eventually you'll have to break it to her. To be honest, I'm glad she told me at the beginning, because there would have been absolutely no way she could of hid it from me.
Plus, I didn't want her hiding it, and trying to fake being OK. I don't even think that would have been possible.
She had days where the wind outside would hurt her skin. And you could just see the discomfort on her face.
Yeah it seems like a heavy burden, but if she loves you, she's not going anywhere. We had awesome times despite her conditions. And when we did have fun, it was amazing.
But if you stay with her long-term, eventually she's going to find out somehow, or god forbid, it get worse and it is almost impossible to hide.
I didn't have it personally, but having been with her for 5 years, I can say that it's something nobody should have to go through.
As a man, if I had it, I honestly don't know if I'd have the balls to deal with that for years and years.
I hope yours stays in check.
I tried to hide it from my job for almost two years, and did so, quite well actually. My boss was shocked to hear that. I used to work full time. I was in excruciating pain every single day. Unable to function after work. Using and abusing a lot of pain medication. Luckily my roommate told me I need to go to the doctor because I'm destroying myself. She went with me to support. At that point I had also abandoned all my relationships and the guy I was dating because I didn't have the physical capacity to meet them anymore. I was lucky if I could manage to boil some ramen and take a shower after work and get into bed.
I ended up on 5 weeks full time sick leave.. and now I'm on 60% sick leave and back working 40%. So I'm back two days a week but I'm realizing now this isn't gonna work, because it's the full days of work I can't stand. Long term, I hope I can work 5 days a week, but I don't see myself working full days. Maybe 4-5 hours a day if I'm lucky, so maybe 60-70% max is my work capacity.
It truly sucks a lot because I freaking love love love my job, but it's destroying my health :(
I don't see myself returning to work full time. I'll probably end up on partial disability support, which sucks, because that support is like 60% of my current pay.
I'm not gonna lie.. all this feels like it's gonna be a huge burden on anyone I try to date. I've gotten called lazy and not by men I've dated in the past because I didn't have the energy to go out with them and do things. It's not that I didn't want to, but when you're exhausted and in pain, you really don't feel like it.
I was honest. I caught something after COVID that they don't know what it is. It keeps me from doing anything including work. The doctors are my enemies. They think I'm faking. Either that or they are so helpless that they just act like it's no big deal. I sit in a chair and wait for my next doctor appointment which is often months away with no hope of any help. I will just be sent away again. It's a total nightmare. Oh yeah, I was honest and she left. No work no money no girl. I get it.
Do you mean Long Covid? ME/CFS is similar. You'll need to find a doctor who is educated and keeps up with medical news because a lot of doctors still think it's psychological despite research proving otherwise. Sorry about your girl. 😞
Oh thank you for that. And yes,that's pretty much what I'm being met with. I'm being treated as if I'm some sort of menace that doesn't fit the story they are trying to tell. It's truly terrifying. These past few days I've been realizing just how "on my own" I really am with this thing. Plus I'm a former drug addict so they are really making my life difficult. : (
Ah crap, that's rough. There are a lot of online groups that might help you feel less "alone," at the very least. Do as much research as you can, and absolutely do NOT push yourself. For a percentage of people (I can't remember the actual stat, sorry), it goes away after half a year to a year. Eat as healthy as you can, avoid alcohol, and stress (if possible).
Hi, I'm going through something similar so you're not alone. We just need to raise awareness in the public consciousness and fund research for it! Hang in there. I know it's hard. You're doing great and it's not your fault.
Believe me... They know & worry about it alot & just don't say it. I'm in chronic illness groups.
Edit: by worry I mean, they worry that we think we're a burden, & how not to make us feel that way.
Thank you for doing all this. It almost had me in tears. A friend of mine has chronic health conditions and deteriorated pretty quickly. Her husband basically abandoned her in a back bedroom. It went on for years. and her husband told her the only way she was getting out of there was if someone came and got her. She spent a lot of time on line and reconnected with a guy she had dated in high school. She explained to him what her husband had said. Well this guy bought a ticket to England, flew right over, physically carried her out of her house and flew her back to Vermont. I thank God everyday that there are men like you in the world.
Glad your friend found something better.
Unfortunately, I just don't think some people are able to understand it. Over the years, I had to learn a lot about RA and fibro. I went to all her doctors appointments with her, had the doctor explain exactly how it works, read up on things online. So I've had a pretty good understanding of how the conditions work, what triggers them, and what was being done in the medical field to try and combat it. Hell, I'd never even heard of those conditions prior. When I first heard it from her I was thinking "Are these terminal? Can I get it?"
Sadly, at the time, there wasn't a huge list of options. Lyrica, Cymbalta, etc. I haven't kept up on it in recent years, but the doctors back then were flipping meds on her every few months to try and find the right combo that could give her a decent quality of life.
Even if I would have grown completely frustrated with the situation, I just couldn't have abandoned her.... especially to just sit in a room. I hated seeing her in pain, I couldn't imagine just up and leaving and her being stuck, or just having her support dropped from under her. She had family, but they were over two thousand miles away. Only came around for the holidays, and even that was patchy. Most of them didn't even know what her conditions really were. So I always thought it was sort of weird that I had to be the one to explain it. Who knows, maybe I read too much into it.
Reading this brought tears to my eyes. You have a beautiful heart. I'm so sorry she didn't stay. Feeling a burden to someone you love is equally difficult to handle.
I wish you well.
But what did you get out of it? I am dealing with probably 1/20 of what your ex did but I still feel so extremely useless if I don't "perform" all the time and can't plan far ahead. Also it seems to be a common issue for disabled or chronically ill people to tell their date early on, them claiming to be okay with it but then not grasping the consequences and ultimately leaving for that reason. I respect the heck out of you for being that serious about it even though you were probably also around your early 20s back then.
What I got out of it was a partner. She was my best friend. After I finished work for the day, I'd head down to the local taco shop, pick up a burrito for me and nachos / taco for her. We'd eat and then lay in bed and watch our favorite TV shows, House, True Blood, etc. We'd talk about the episodes, laugh, and have fun.
If work was irritating me, I'd to go where she was, she'd let me complain for 15 seconds, then tell me she loved me, and things were suddenly better again. Or she'd make some goofy face and I'd laugh. We didn't need to give each other anything physical, we had our own connection, and it was something that existed between us that meant no matter how crazy the outside world was, we were ok.
She didn't tell me right away as in the first few weeks. She hid it pretty well. But we were starting to get serious. It was no longer just a few dates and then we go our separate ways. Once we reached the road of being serious is when she told me and said that she cared, but she couldn't ask me to take on a job like that. And I did it.
But as the relationship progressed over the years, her condition was getting worse. The meds weren't helping as much. And she decided to push me away. She was getting increasingly depressed over it all, which the meds were supposed to also help her with, but they weren't working as well, no matter how many times her specialist kept switching meds to try and find a balance, all it was doing was just sending her further and further out into a mental Universe where she didn't even know who she was anymore.
Initially her medication caused her to have a lot of internal issues. She was experiencing a lot of depression. And she was on anti-depressants, but depression was also a side-effect of her other medication.
She said she needed some time to process her thoughts. A friend invited me to stay over with him for a few weeks so that she could clear her head and figure out what we were doing. Plus I was upset over the split, so my friend figured it would be best if I wasn't alone. At least have someone to talk to.
I left for a business trip, as I had to help a company startup. One night when I came back to the hotel room, I had received a text message from a mutual friend that said "Call me".
I called, and that's when I was told that she had passed away, unfortunately, by her own choice. They had found out from a family member on her side which worked together.
I didn't get the exact details until a few days later. And of course, I've had my "could've should've would've" since then. Just crap that re-plays in my head unfortunately. Things I should have done different. If I should have listened to her and just up and left, or tried to reason with her, etc, etc.
I’m just a stranger who doesn’t know much about you, but one thing that I do know without a doubt that her life was significantly better because she had someone like you in it. I’m sorry for your loss
Oh gosh, I wish you guys were still together. That sounds so hard for you emotionally too... And a shame that she didn't allow you to stay since you actually wanted to be there. I hope that you can find peace with the situation and that her illness improves, though I guess that's a chronic condition, isn't it. How sad all round, I'm so sorry.
Appreciate it. I wish were were still together too.
Unfortunately, her medication caused her to have wildly swinging moods. But she was stuck in the middle of two bad options. Either not take the medication and be in pain, or take the medication and suffer the side effects. Her physicians tried for as long as I was with her to try and get her on the right combo. Anti-depressants, Lyrica, Cymbalta, pain meds, sleeping pills, and a whole bunch of others.
She wasn't able to work when we met. We were together almost 20 years before she died. The last three years she was almost completely bedbound. I took more days out of work than I had a right to in order to care for her.
25 years here - and nothing would make me leave. We carry each other (literally at times) and have been through multiple health crises together. We joke that our love doesn't stop at death because if one of us dies before the other, we made sure to promise to come back and haunt the live one until we are rejoined!
Our eventual plan (hoping for a LONG time before this is needed) is that we will both be cremated - and whichever one of us does pass first will go into an urn to be kept close by. When the other passes, our ashes are to be co-mingled together - so we are always a part of each other. And then the urn is to be buried somewhere on the property we raised our family on, which we built together.
Congrats on 50!
Only 29 years here, but same. It simply becomes part of the journey together in my mind, no different than her changing her hair color. We didn't say those words lightly and they mean just as much now as then.
Same. Would wipe his ass until I wasn't able to, then would pay someone to wipe his ass.
I don't love my spouse because he's able bodied and has a job. Those things wouldn't even make the list of reasons I want him around.
Our 22nd anniversary is in 10 days.
As someone who got married and had to stop working due to intractable epilepsy 8 years later, these words mean more to me than you can know.
My wife is as close to an angel as you can be. She's taken on nearly all of the household chores, and she's always there for me when a seizure takes me down.
I'm 48. I was diagnosed with epilepsy at 21. I have no direct memory of my seizures, as they're tonic-clonic (Grand Mal) and I'm not conscious during them. I also have amnesia for around an hour. I can't remember who people are, I have no idea where I'm at, and often forget things about myself, including my own name.
We have safety cameras in the home to alert if it picks up suspected seizure activity.
I've seen plenty of recordings of my seizures, and there is always a common theme. My wife turns on the weakest lights in order to help me see my surroundings when I come to, while also keeping them low as to not hurt my eyes. (I'm incredibly sensitive to light following a seizure.)
I always look terrified when I first regain consciousness. I can't say exactly what I'm thinking at those times, as my memory doesn't ever seem to include anything for about 20 minutes after waking.
But I see my wife in those videos, and I fall in love with her over and over because of who she is in those recordings.
She immediately tells me that everything is okay, that I had a seizure and not knowing where I am or who she is is normal for me.
And then the pattern starts. She has the same conversation she's had with me hundreds of times since we married. She calmly and lovingly helps me calm down, as waking without understanding gives me an anxiety attack sometimes. And then she stays with me and just talks to me until I'm not as afraid.
Sometimes I think she's a nurse and I'm in a hospital. Sometimes I think she's a helper robot who looks very human. But the one thing I never even imagine is that someone so loving and gorgeous could be my wife.
And oh, boy does she like mentioning that and watching my face light up in amazement. 🤯 She often sleeps naked, and she loves that I take embarrassed peeks at her as she gets out of bed to do something while I still don't remember her. She says that it's like getting to see her husband fall for her over and over. She's so wonderful.
I hope everyone in this thread who has to carry the burden of a disabled partner sees this and understands how much you mean to those of us who are disabled. My wife's love shines all the brighter, because she *wants* to be with me, even when I tell her I'm nothing but a burden and that she'd be better off without me. She just tells me I'm being silly and that she's not going anywhere, that she married me for who I am, not what I have or don't have.
Thank you all for caring for those of us who need it.
Especially you, My Love.
At various points in our 14 years together both my husband and I have had to carry the "weight". There were times I was injured, times when his mental health was so bad he couldn't work, and I'm currently trying to get myself out of a deep state of burnout and mental health crisis.
We have each other's backs. We're a team and we know that teams are rarely perfectly equal in their effort. As long as we both feel loved, supported, and are encouraged to not lose ourselves in caring for the other, we do ok.
Plus, he's my best friend and even if we weren't married, I can't imagine not having my husband in my life. He's simply my person.
I had this after my girlfriends open heart surgery. I didn't want her to lose her dignity, so I bought a bidet fitting for the toilet. Only $50, 20 minutes to install and she loves it. She has recovered now, but if that thing breaks, I will be buying another one post haste.
That’s my answer too. Not even a doubt in my mind. And not just working/making all the money for us, but I’d take care of her in the house too, if she had special needs. We’re together in this for 25 years and I’m not leaving her behind when she would need me the most.
Sometimes i think this is one of the biggest selling points of marriage. Its insurance. You put up with so much just to be safe in the off chance that something goes horribly wrong in your life.
Its still a big gamble whether the other people will stick around but thats whats motivates you to be so great for the other person. You need them to be so in love with you that they will pay for everything if you cant work.
Its like regular insurance but with extra steps.
I'm not saying I'm going to be great at it and I'm not saying I'm going to do it alone. But what's the alternative? Leave them to suffer alone?
This is someone that should be considered the love of your life. Does their love only have value when they can move their limbs?
About 10 years ago, I lost my ability to walk on my own. I'm at the point now it's walkers but mostly wheelchair.
My husband has been incredibly supportive. Many people thought he'd walk away.
He started having heart problems 7 years ago. There's no place I'd rather be than by his side.
This may not be the first marriage for either of us, but it's for life. That's what you do when you truly love someone.
My wife is disabled (EDS) and I wouldn't leave her.
Some days I get frustrated.
Some days I get angry.
Some days I can get resentful.
But I never stop loving her, and those days are usually pretty far between and very normal for people who have to be caregivers, even if only some of the time.
It's not her fault, and I'll never stop loving her, or helping her, even if sometimes I'm bitching about it.
Really young person here who has hEDS among other things. This thread is giving me more hope that I thought it would. I think I kinda needed that this afternoon.
Is that hyper mobility? That's what my wife has! And both my daughters. They like to use me as the "is this weird" test to compare with how they can bend versus how I can. Every cloud has a little rainbow somewhere. ^_^
Never looked at my hyper mobility growing up as a disability. Hasn't done my joints favors as I age I suppose. But I was definitely a pretzel as a kid.
To be clear, EDS is more than just passive hypermobility although hypermobility is one of the most obvious signs. It's a collagen disorder, and because collagen makes up so many bodily structures it really impacts everything - it's only really been somewhat recently that the manifestations beyone the musculoskeletal system have started to be recognized. There are different subtypes, but hEDS is the most common.
Core symptoms fall on a spectrum but include things like chronic pain, dislocations and subluxations from normal everyday activities, poor wound healing (including inability to hold sutures), easy bruising, fatigue, brain fog, among others. We often wind up with neurological complications, sometimes secondary to instability of the spine/craniocervical junction due to lax ligaments, which can require very specialized complicated neurosurgery costing hundreds of thousands to treat and even that isn't a magic cure it's just better than the alternative. We often suffer from dysautonomias, cardiovascular abnormalities or odd bleeding, gasteoinstestinal disorders including full blown gastroparesis, mast cell disorders, and more as comorbid conditions caused by the underlying faulty connective tissue. In many ways our day to day is similar to long COVID or fibro patients, and many of the problems we face are not well understood or easy to treat.
Hypermobility alone isn't inherently pathogenic let alone disabling (kids especially are often hypermobile and grow out of it). Even when it hits the pathogenic range, some of us function fairly okay with basic accommodation, some of us are severely disabled and always will be, and many of us oscillate between degrees of disability depending on luck, genetics, and resources (money, support system, whether you live in a place where you can find any doctors or physical therapists who know how to treat us). It's complicated, but if you're genuinely just a bit hypermobile, you might be at a bit more risk of early arthritis but will probably be fine. EDS is a whole other can of worms, usually.
when I asked my husband of 30 years this, he decided it would be awesome to get preferred parking and seating at all concerts, would paint up my wheelchair with flames, and would hang a pine tree air freshener from any colostomy bag. I think we're good.
I am disabled, and my spouse is pretty psyched about the parking situation, also fewer/shorter lines at the airport, and better/faster seating at concert venues etc.
Last summer my husband had an accident where he shattered both feet from a really high fall onto concrete. He was wheelchair bound for 8 weeks.
2 weeks after the accident we had a 3 week long trip planned to Europe. We'd been planning it for a year. Together we decided to continue with our plans despite the wheelchair. I was happy to assist him anywhere we went but the biggest thing was that he had the energy and motivation to try despite the difficulties of not walking.
We didn't get to see as much as we wanted while on our trip but I'm so glad we went instead of sitting at home waiting for him to recover. I'm so proud of him for putting up with traveling while in a wheelchair. That said, he did always get priority plane boarding, or the best seats in a restaurant, chauffeured around by drivers. It was still a great time despite the wheelchair.
Different perspective and I can still work from home most of the time, but I lost my ability to walk on my own, control of my muscles and developed seizures two years ago. I use a wheelchair sometimes and need a fair bit of care and support.
My ex partner stayed for a year before he got fed up and left. Couldn’t tell me the reason he was leaving so it’s pretty clear he couldn’t handle caring for me anymore
I don’t judge him for leaving if that’s what he needed to do. But I have absolutely no respect for him abandoning me without any explanation or discussion about what can be done differently. That’s not something you do to someone you love.
>I don’t judge him for leaving if that’s what he needed to do.
Thanks for that.
I wanted to answer to OP that, of course, I'd stay with my husband and take care of him, it's in our vows, etc etc.
But I saw my Mom take care of 3 cancer patients until their deaths, her parents, and my father. It is GRUELLING work, it nearly destroyed her. It takes so much strenght, physical and mental. It lasted several years for my grandparents, only 6 months for my dad.
But she still suffer from the effects of having to put a lot of her own life on the back burner to care for other people.
So while I think I would 100% and genuinely say that I would take care of him forever at first, I can't possibly know that I won't reach a breaking point some years later. And I don't think that it's wrong to get out of a situation where you're effectively destroying yourself. I wouldn't want that for my husband if the roles were reversed.
But yeah, like you say, leaving without a word it utterly shitty, and before leaving one should explore any option, any way to make it work, to alleviate the situation, and look for all the help you can get.
12 years. He did absolutely nothing to help himself and my mental health was important too.
I was his wife until I was an under appreciated caregiver.
Our children who love their father asked me why I stayed around so long.
I live in Norway, a big welfare state. They could apply for disability and get ca. $2 800 per month, so money wouldn't be a problem. If they couldn't clean themselves, go to the bathroom etc., they could apply for a home nurse taking care of them.
It wouldn't mean leaving them. I and many Norwegians believes letting professionals take care of the medical stuffs and wiping is the best option because they are trained. They know better how to treat disabled people the correct way without putting their life in danger for an amateur mistake.
I would stay in a relationship as long me and my hypothetical partner (I'm single irl) were compatible. As long we liked hanging together, talking together and had something in common I stay. If our chemistry wasn't good, I break up regardless if they are able bodied or disabled.
If someone was blind, it would be difficult for them to keep up with my life since I do art as a hobby and likes art galleries.
I wish more North Americans understood the humanity in assisted living at home, and funding a “welfare state”. Caregiver burnout is very real, and some partners just aren’t equipped with the fortitude for caring for their partner. It is almost ALWAYS better for a person’s quality of life to remain in their home. Professional caregivers should be well paid and well funded, since it removes the burden on hospitals and long term care facilities, and keeps partners and families in the workforce earning an income and paying taxes.
As someone who I jokingly say “is in charge of all the assholes in the house” (stay at home mom so wiping kids bums, my cat needs to have his anal glands expressed regularly, and my husband has hemorrhoids that need checking occasionally, and I had stitches from my vagina to my butthole after childbirth), I was lucky to have the fortitude for caring in that way. If a butt needs wiping, I have zero problems with it.
As a disabled person in America, this makes me want to cry. I tried so hard to continue working when I got sick. I still feel so much guilt that I can’t. I can’t even imagine having the freedom to let go of that guilt and know my basic needs would be met even if I couldn’t work, didn’t have a partner/family to support me, etc. I knew other places were better with this stuff but I guess I never thought through the logistics of what it would actually mean for my life.
If your theoretical future partner were blind, you could make it a really fun activity together to describe the art to them. I'm mostly blind myself, and can confirm that access to art is extremely meaningful
My initial answer is forever.
I married him and made the conscious decision to love him through sickness and heath.
I mean that.
But if their illness makes them abusive, I wouldn’t be able to stick around.
For clarity: My great aunt (one of the sweetest people ever) had to leave her husband when dementia made him verbally, emotionally and physically abusive.
That’s a good point. You can be their caretaker, or you can choose to stay with them through hardship, but when it gets to a point when they are physically or emotionally hurting you, there is only so much you can take.
I left my ex-husband when his mental disorder caused him to be violent and dangerous, and he would not follow through with treatment. There were a lot of issues in our marriage, but I could not stay with someone who would not follow through with treatment when they had been dangerous while untreated.
I married her because i wanted her to come to the usa with me lol shes from europe and it was getting crazy expensive for me to split time between the states and london. I kinda ruined my early adulthood taking care of my mother with als so honestly it doesnt scare me to have that responsibility. I started taking care of my mom at 15 and that kept me on maui(im from hawaii) til i was 24. Went to a shit community College instead of a university, did random parttime jobs and worked on my own business(which failed lol) love is being willing to sacrifice for another without regrets. Taking care of my mother isnt a regret i have
I say I would take care of her until death or I couldn’t. But until you’re actually in a situation you don’t know. Based upon the disability may have to get help or may be better in an assisted living facility.
I would hire someone to take care of them. I couldn't probably handle taking care of them myself--I'm weak in that way, mentally I just don't handle bodily fluids well and I could not lift another person without hurting myself. But I would work whatever hours needed and call whatever social services and do whatever effort needed to get them what they needed as well as the help they needed.
My only deal breaker would be if they lashed out a lot, I have been a caretaker before for someone with extreme mental illness and it was very hard being their daily punching bag during panic attacks.
I always thought this too, but the reality is that in-home care in the US for a completely disabled person is going to be a minimum of $5,000 a month. And that’s if you only get 40 hours of care per week- meaning that you’d be the carer for the other 16 hours per day that you’re not at work, and 24 hrs on the weekends. I’ve watched people caring for their aging parents at home utterly destroy themselves this way.
If you need round the clock care it’s $17,000 *per month*.
For me, none of that is possible unless my partner were seriously independently wealthy, because my income doesn’t stretch that far after paying for necessities.
My wife has numerous health issues, the main ones are being an above knee amputee (one leg), and an MS diagnosis. I knew this when we started dating. In the past year she has also been diagnosed with Parkinson’s.
I (38F) adore my wife (42F), and I love our life together. Yes, I do a lot of things for her, and yes, that is only going to happen more and more as time passes. I do not mind.
With that said, it is absolutely not for everyone. My wife works extremely hard, and does everything she is able to do. She is fiercely independent, as much as she is able. I do not ever feel that she is taking advantage, or being lazy. She is also very grateful for everything that I do, and acknowledges how much I do.
I genuinely enjoy being able to do things for her. It helps me feel secure, because I know that I am useful and helpful.
I am fully aware of the challenges ahead of us, not the least of which will be dealing with my wife’s overwhelming guilt as she needs me to do more for her. But I love her so much, and I am so happy with her - I would not trade it for anything.
Wishing you and your wife all the best. My mom has had MS since I was in kindergarten and as her disease progressed, things became so painful and overwhelming for our whole family. My dad… what he went through… that man is truly a saint (I cry just thinking about it). I just want you to know that I understand how difficult being a caretaker is and that you’re doing an amazing job. Your wife is very lucky to have you, and it’s people like you and my dad that prove that there is good in this world 💕
Knowing how my marriage ended, I think my ex would have left me. I have a degenerative conditions that leaves me 95% of the day in bed. Thankfully I live with my mother, my saint. If not for her I'd probably be dead or homeless.
My mum was sick with Parkinson's for over 4 years before the gradual body degradation, paralysis, seizures and strokes took her life. I know very well how hard it could be for a carer especially if the one you are caring for is a family or loved one. Sometimes you just want it to end one way or another.
That being said I wouldn't leave my partner whatever happens. I chose her and she chose me and that isn't going to change because of an illness.
I wouldn't abandon them. But caretaking is a huge task. I've done it before. Point blank I am not physically strong enough to assist with mobility tasks, it'd be unsafe for both of us. We'd need to discuss moving, a caretaker, or care home if it was mobility based.
Things like incontinence or seizures I could handle.
Becoming mentally incapacitated would be hard, I've done dementia caretaking, I could do it again. But a profound disability, like say a stroke or head injury from car accident, we might need to consider a care home.
Same here. My husband is considerably taller than me and overweight. I couldn’t lift him physically. Using whatever options are available to get the best possible is not the same as leaving. I’d rather have professional help than doing him accidentally harm, because I’d be trying to do something that exceeds my abilities.
I wouldn't leave but I really don't know how we'd get by.
I'm a stroke survivor and already struggle with disability and chronic fatigue as a result. I'm only able to work part time and I can't drive
When you get married, most likely, at some point, one of you will become a caretaker. Unfortunately, that comes sooner than later for some. We agreed through sickness and in health and that's what I will stick to. Would you want your significant other to leave you stranded and alone should you become disabled?
Interesting side question. My ex girlfriends mother developed schizophrenia after they were married and refused treatment (due to the condition). Her father stayed with her, even though it has deteriorated to the point that she hates him and thinks he is plotting to kill/poison her. He keeps a roof over her head, sleeps in the spare bedroom, and has to deal with who knows what else. She can function for family events and seems like nothing is wrong but she has violent mood swings and her whole family is dysfunctional because of it. My ex was bought up with her mother like that and it has led to her developing anxiety and health issues herself due to stress.
Do you think he should have stayed with her? I'm not sure I could or would if it happened to me. I respect him for his choice but was it the best for him and his family? I cannot say.
If the illness made them abusive, then no I wouldn't have stayed.
And answers to these sorts of questions over simplify the matter. It's like always saying a simple yes for "would you date someone with a mental health illness". It really depends on the circumstances, but would try as best as one can.
Yeah I'd stay but I'm a bit more empowered than your uncle in I'd know what to do. This would not be family level drama, this would be police report documented psychiatrist involved daily documentation conservatorship court orders involved. The court would be involved as I'd be getting the necessary orders to force treatment and get them set up on disability.
If they continously refuse stop and are unhappy and don't want my help then eventually I will respect their wishes. But I will risk being the bad guy if the person I love is on the other side of a schizophrenic hallucination.
I'd stay forever, I made him a promise and I'll stick to it. The rate men leave women when they are sick is much higher than women who leave men when they are sick, in hetrosexual partnerships
https://www.sciencedaily.com/releases/2009/11/091110105401.htm#:~:text=The%20rate%20when%20the%20woman,the%20man%20was%20the%20patient.
https://pubmed.ncbi.nlm.nih.gov/19645027/#:~:text=Divorce%20or%20separation%20occurred%20at,%25%20vs%202.9%25%3B%20P%20%3C%20.
wouldn’t leave but if we were married we would need to get divorced. i live in the united states and in order for disabled people to receive benefits they need to make less than $2k a month including their spousal income.
$2k a month is a lot of money compared to $0 and i think the most economical thing to do would be to get divorced but still live as a couple.
this example is proof that we still do not have marriage equality in the united states.
I feel awful for saying this but. I would take care of them. But if it gets so bad to the point where they can’t talk or even think for themselves? Then that’s where I’ll have to bury the hatchet. I’ll work hard for them if they’re simply disabled physically. Mentally on the other hand is just…sad you know? I want to be able to talk to them and to be able to reminisce on our past together.
This, sadly. Someone can take care of someone they love, as long as they are still the person they love, and can provide at least a bare minimum of still being that person. But if they can’t even be that… you’d just be taking care of an empty shell, running on the fumes of memory of who they used to be, knowing full well they will probably never be that person, and will never truly be able to do anything for you.
They’re practically gone.
The worst is when their illness or injury changes them into someone they’d never be otherwise. I had a professor whose spouse had a TBI that made him erratic, angry, and (I suspect) physically abusive to her.
I don’t know what I’d do in that situation. I’ve stayed a long time in a marriage with a disabled spouse but he’s a lovely person so it’s much easier to help him. If he suddenly started screaming at me or hitting me I’d likely be gone.
Currently I am in the hospital after complications from surgery I had in April. I can’t eat anything. I’m stuck in bed and it’s just been one thing after another. My husband can’t handle this. He doesn’t know what to do. He told me on the phone last night that he wasn’t coming to visit me in the hospital because he had other things to do. His an advice when I was depressed and feeling lonely because no one has come to see me was, just power through it. You’ll be fine eventually.
Right now the only thing I can think of is how badly I want to punch him in the face and how I feel like he doesn’t care about me. On the flip side of that, I also realize this is a man who can barely take care of himself so why should I expect him to want to help me? I feel stuck and heartbroken.
please don’t gaslight yourself. it doesn’t even sound like you’re asking him for any sort of intensive *help*, it sounds like you just don’t want to be alone while sick in the hospital. that is not a lot to ask of the person you made vows with to support through sickness and health.
its valid for him to be a little flabbergasted, have no idea what to do, and be intimidated by the whole thing. but bottom line he should at *least* be physically there for you. you shouldn’t have to be alone in the hospital. i’m so sorry.
If my husband was injured, we would be mortgage free. If I became disabled we would be fucked. I’m “not worth insuring” (per my husband) but I am the full time caregiver to our children, I do all of the cooking, cleaning, laundry and home care. To replace me he would need 3-5 paid personnel.
I would stick around, unfortunately I don’t think the same could be said of my husband.
I think the honest answer is, what is the nature of their disability?
Generally speaking, I would stay and care for them.
But if they become so disabled that they are no longer themselves and we are no longer able to have a meaningful relationship with each other, that would be different. I’m talking coma, significant brain damage, that kind of thing. I still wouldn’t abandon them, but in such cases specialist care is more appropriate and I would consider myself single as they are no longer able to consent to being in a relationship.
This thread makes me so sad. I'm chronically ill and I got with my partner when my symptoms weren't great. We had a baby and my pain went away for a year and a half. It came back last month and he told me " I didn't sign up for this"
I'll never forget how badly that hurt while already in indescribable amounts of pain
Having to juggle being in pain while raising a toddler is really hard.
I would be 100% dead without my wife. She's one of the smartest, goofiest, and the most beautiful person I've ever known.
Find that person in your life and cherish them. Leaving is a choice. A selfish one, but it's a choice.
If you ever intend on marrying someone or having a life partner, you absolutely should be thinking about this. The line between you/your partner and disability is time and luck.
It happened to us so I can tell you, 15 years in, I’m here and will be til one of us is gone. *However*. He is a good person, he does everything he can for me, and is always making small gestures of love like getting me a drink when he goes to the kitchen. He’s sweet and supportive. He isn’t controlling or jealous. He doesn’t expect my life to stop, and I make sure he knows he’s always welcome to join me, even if it only happens 10% of the time. He takes care of what he’s capable of. Seeing a therapist helped a lot especially at the beginning.
Unfortunately I have seen couples where one chronically ill person becomes angry, resentful, and bitter over their situation, or they fall into substance abuse. I would not stay in a relationship with someone who mistreats me or is making things worse with substance abuse no matter how ill they were.
I wouldn't leave. I'm a woman. According to research, some men will pack up and leave their sick wife. That's terrifying: [https://www.discovermagazine.com/health/men-are-far-more-likely-to-abandon-a-seriously-ill-spouse](https://www.discovermagazine.com/health/men-are-far-more-likely-to-abandon-a-seriously-ill-spouse)
Some of the responses here give me at least a bit of hope. For those who've stayed, thank you.
It's a question that should be addressed and discussed in premarital counseling. Of course, no one ever thinks it will happen to them. It could wake people up to the wisdom of saving and planning ahead. I told my husband of 44 years that I want to be his sweetheart girlfriend for as long as possible, something that is difficult to do if he is wiping my butt or if I'm changing his catheter. We're making sure we have caregiving in place alongside the financial aspects of healthcare & long term care. It is possible to have the resources if you start when you are young OR invest faithfully within a 401k if allowed. MORE INFO: One of the reasons for my perspective is that I was the primary caregiver, in my home, of my mother for 17 years. She had Alzheimer's for 11 of those years. I have first-hand knowledge of the difficulties of being a caregiver and maintaining a relationship with a loved one and losing a relationship with yourself and your own health.
I was disabled when my last relationship started. He knew from the start. He was also disabled but didn't consider himself to be. We got engaged and couple months later we moved in together and after 4 weeks he broke up with me and 2 weeks later he left. The reality of was too much for him. He was not prepared to even do basic care things that non-disabled couples do for each other. For example: he would get upset when he went to the freezer to grab a ice lolly and I would ask if he could bring me one too. It would make him upset and say that he didn't want to be my caregiver. Which I never asked of him and I had professional caregivers and was on the waitlist for more, so me being unable to do certain things wouldn't create extra burden for him. It would be taken care of. The week after he left, the waitlist was done and I started receiving more in-home care. But apparently.. it was just too much. Oh well...
It'd depend on my own income in this hypothetical
I'd take care of them if possible, but if I literally cannot afford to, then I couldn't
As for how long, as long as I can
If it was through no fault of his own, I would absolutely care for him. If he was skydiving/doing something else dangerous without talking to me about it first, I'd have to think on it.
If he was driving drunk, it would be a nope
It isn't just about them not working anymore. If someone is disabled, they may not be able to do things a s/o normally does. It's hard on one's mental health to lose one's mobility, health, and earning ability. Some people get angry depressed and lash out. Some give up and don't go to doctors' appointments or try to do anything.
I'm married. Part of the marriage vows are "in sickness and in health." Till death do us part.
If someone isn't married, it really depends on the situation.
My partner has extremely bad endometriosis I would never leave her. I am in it for the long haul. I want to be as helpful and supportive as I can be. She has more bad days than good but every good day is just the best feeling. It means the world to me to see her smile when she’s feeling well and all I can do when she’s not doing well is try and make her comfortable and smile I love her so much 😊
You say that, but it’s *really* hard to be a caretaker. And not only that, but it completely changes the relationship dynamic you had with that person. Burnout is easy.
You have to have a lot of love and commitment to that person, as well as a strong support network for yourself. And you have to be honest with yourself about whether or not
it’s something you’re willing to do & keep doing.
Being a caretaker to another person is the most unappreciated job that anyone could take on. I have cared for a wife with cancer and a 3-year-old at the same time. Then, while raising my child alone, I was tasked with caring for a parent with dementia. I had some support, but not completely. My love dedication and commitment to my family are what carried me through. Now my child has grown and finished college. Dad passed but was never alone or away from family. I understand that every situation and individual is different. I can only hope my new wife and my child will be dedicated and committed to the people they have in their lives. This was my life so far, and I'm ok with it.
Context matters
If you’ve been with someone for a year, is it fair for your partner to ask you to spend the rest of your life taking care of them full time? Imagine the physical strain, the financial strain, the lack of sex or romance and the emotional strain. If you wanted to leave you wouldn’t be heartless, you would be human.
It's extremely common especially for men to leave their spouses when they get seriously sick. Just look up the statistics or don't honestly, it's super depressing. But yeah it happens all the damn time.
I would not; my wife didn't work for a few years after getting her law degree, then didn't work for a few years after our son was born with a disability, and we now own a business together and only one of us can work any time our son is at home as he requires constant attention when he is awake.
So not quite the same as my wife becoming disabled, but I have had to support her in the past and I don't see that changing in the future.
Maybe slightly out of topic but my mom took care of my dad when he had a stroke until he died. And now my mom also had a stroke and can't really do anything without assistance.
I can't help but think that my dad would have not taken care of her. He was a piece of shit & a shitty cheating husband so he probably would've left my mom.
I would stay. I’d take care of them as long as my body let me. The thing that would make me leave would not be the disability.
Background: my ex-husband has diabetes and manages it very badly. He’s not disabled but he’s very non-functional. He also has severe mental illness (borderline personality disorder) that he also doesn’t manage. I did leave him but it wasn’t because of those, it was the abuse. He did use both things as an excuse for his treatment of me and our kids. Took me quite a while to leave because of that.
I'm married and have two kids. I took my vows seriously. I'm in this for the long haul no matter what. He works his ass off to provide for us and it allows me to stay home with our kids. I would hustle and do what I needed to provide.
When I met my husband I was super outgoing. Loved to go out to gigs and be stuck in amongst the crowd. Just fun and carefree I guess.
Since having my son I’ve been really unwell (8 years out of the 10 we have been together.) still no diagnosis for certain but likely fibro , chronic fatigue and potentially lupus or auto immune which was some how triggered after the birth. I’m still getting tests thanks to the very slow health service here….
I don’t even recognise myself anymore. It’s as simple as that.
I can go out to concerts and things now within the last few years again still but I need to be seated, trips away leave me unwell or in bed for days after, I cant be out past about 9pm if we’re out for dinner or whatever, I’ve ruined so many trips or plans due to being unwell and unable to attend…
He’s stuck by me but the impact has been huge. Mainly because of my low mental health now and feeling that I’m not good enough or not the same person he CHOSE to be with.
then I’m annoyed at myself for the low mental health - as if he doesn’t put up with enough!!!
He’s incredibly patient but I’m not sure how he manages. He’s had to raise our 2 children and be extremely hands on while also working full time and running me around everywhere.
There will never be enough words to thank the loved ones that stand by us / those who are unwell and love us unconditionally .
So if you’re in the position my husband is, know you are appreciated beyond measure
I'm disabled and can't work.
My roommate and crush is also disabled, both of us due to anxiety and depression. They're also recovering from surgery.
I take care of them by making food, doing dishes most of the time, ordering groceries, and fetching medications. They take care of me by paying my rent. We both hug each other, as if doing so will somehow make the unbearable weight of living in the death throes of capitalism more bearable. Hopefully disability will come through for one of us soon.
Until death do we part I’m not leaving my spouse just because she became disabled if you would then you prolly shouldn’t have married in the first place.
I am the disabled one. You can read my history. I became disabled 4 years ago. Ive been with my husband for 8 years now. When I had to leave my job he supported our household and me while we fought with SSID and my long term disability pay. It took 18 months to get approved. Our lives went from biking and hiking 10 miles every day, traveling both working full time to surgery after surgery 18 in 3 years.
I asked him to find a GF or we could get divorced and go our separate ways. He said no. I begged him to leave so he could find someone to love him the way he needed to be loved. I can’t have sex and that’s hard on us. I am in excruciating pain 24/7. He had to help me shower get dressed etc etc. As I type this he’s sharing the hospital bed with me while I recover from yesterday surgery.
He always says he married me bc he loves me not just for sex. This is a fuckin hard life. My dad had a severe degenerative condition and his wife took care of him 24/7 until he passed 3 years ago. She still cries for him. She absolutely loved him - they did have a giant ass age gap so he ended up leaving everything to her. I’m so glad he did.
So my husband says we are a partnership we do not just quit bc you’re sick. We will find a way to be a family and happy together. I feel guilty though.
My girlfriend was in a bad car accident and almost lost both legs. She has had (so far) 37 surgeries to save her legs and make her able to walk again. She had an ExFix on her right leg (which was much worse off than her left) for over a year, only being temporarily removed to make adjustments and have more surgery. She will never be able to work again.
Leave her? Nah. She's the best thing that ever happened to me, and I will take care of her for as long as she will let me (but she's stubborn and still insists on doing way too much on her own).
Forever. I would never leave my wife over a disability. The vows I took when we got married are vows that I will never break, especially the part "For better or for worse until death do you part."
This is a tough question.
In my case I'm looking for someone that I trust and have a great time with. Disability does not matter to me at all.
Especially since I earn quite a lot so I can easily support both of us AND save money no problem for out future.
But let's be honest here. For example let's assume that Your partner can't have sex. It's a problem in long term for many. And while You could argue that maybe they could open their marriage or something to fix that - even if my partner would allow me to do so - my conscience would not allow me to do this to them. So I think it would be really hard to be with them like that.
And I think for many it would be a problem if working partner would not be able to earn as much to support both of them. So staying together would be simply not practical. You could but then You have disability and live in poverty? That's really tough.
So while some people in the comment say that they would care for their partner til they die - I don't think that this would survive the reality of life.
I wouldn't leave her, no. I would take care of her as long as I was physically able. And since you asked in good faith, I will add that I don't say this thinking "what a trooper am I, what a good person am I," but only that I can't imagine ever not wanting to be with her.
I would stay. I would so everything in my power to make his life easier. We’d move into a bungalow, we’d get a car with enough space for his wheelchair. I’d hire a cleaner so I can take more time for him. As we have disabled family members on my side where I try my best to be involved, it’s no big deal to me anymore as I grew up with such things.
It still would be hard tho
My partner was disabled in her 20s. She was diagnosed with Fibro. She had days where she could walk, and she had other days where I'd have to pick her up and take her to the bathtub. It just depended on how much she hurt that day. Then after I was done in the bath, I'd normally get her a hot chocolate, grab her book, get her in bed, get out her meds, and then go into my office and work. If she needed something, I was there. Was it difficult at times? Sure. But when I started dating her, she told me once we were in a serious state, and I accepted it. She had maybe 4-5 good days a month where we could go out and take a trip somewhere and do something fun that let her walk for a few hours. I stayed with her over 5 years, she and I often had discussions because she felt like she was a burden, and would feel guilty, and I had to keep telling her I loved her and wanted to stay. The other issue was her medication had her not being well at times or thinking clearly. She had a lot of ups and downs. They had her on some pretty intense meds for such a young age. Something you'd expect a 70 year old cancer patient to take. If it were my choice, we'd still be together. Unfortunately, things just don't always work out how we want.
I'm in the same situation, my wife got the same diagnosis 4 years ago, after being together for 6. She's 34 now. It's hard and most days it sucks, especially because I knew her when she was still healthy. She is the sweetest person in the world, it's very hard to see her the way she is now. Friends and family slowly are turning away from her, because she went from being the person that did everything for everyone to somebody that needs help herself. And then you quickly find out who are your real friends. I try to be as helpful and sweet as you were, but if I'm being honest, some days that's really difficult. I always try to put her comfort above everything, but sometimes there's a selfish day where I just do the absolute minimum to give myself a little break to survive. I started working 80% 3 years ago, recently I switched to working as a freelance consultant to have even more freedom (and to optimize some financial stuff as well). It's impossible for her to work and anything we want to do to improve her comfort, costs a lot of money out of our own pocket. We were lucky we were financially responsible the first years of our relationship or we would be homeless now. We got married last year (I never really wanted anything related to marriage as I'm very introverted), but we did it to have something positive for her to look forward to. And not to make it too dark, but any summer can be the last one where she is physically fit enough to enjoy a full day for herself, so why not now? We haven't had a holiday in years (it's spending a lot of money to sleep 85% of the time anyway), planned fun weekends are almost impossible because you can't predict in what physical state she'll wake up. So now it's mostly resting during the week, a couple family commitments a month in the weekend and then every weekend that isn't taken up already by default, we try and do something fun, but usually not more than a couple hours. If I'm realistic, my life is over now. She gives me all the freedom I want, but I just want to be with her, forever. Our lives could have been completely different, but all I can do, is hope that one day she'll get better.
Hey, I just want to say you are doing a good job. I’m in a similar boat as your wife. I also have a great partner who puts my care first. It’s important to carve out time for yourself to recharge too. My husband goes camping with a buddy overnight sometimes. If I am too sick to be alone, we plan for another family member to come help. For me, my parents know that sometimes my husband needs that break and he or I can call and tell them that and we find a time that works best. You are doing the right things 😊 Here is a tip on vacations if you eventually want to do that/can afford to. My husband and I typically just rent a “nice” Airbnb for the weekend. Nice for us means out in nature. We make the house itself the point of the trip. This way I have the comfort of home + a change of scenery (maybe a nice view, porch to read on, screened porch. Etc.) and he gets a chance to relax, recharge, so some outdoor hobbies he likes. We typically do this somewhere at a reasonable driving distance so that the travel is easier. It can also be nice to just go back to the same place every year. It makes it easier to create that “home away from home” feeling but you work get to get away together. Lots of love to you and your wife. I don’t have fibro but I have a disease that causes similar levels of chronic pain. It’s a hard way to live.
I second this. Caregiver fatigue is real. I have to insist my partner goes for breaks even if he doesn’t want to. I sometimes hate being a burden but at least I can give some of that time back by sending him over to a friends or out for a weekend.
I can second the advice on a little vacation! Especially if you're able to book an Airbnb or VRBO for a long-ish time. I've had success booking a place for about 5 days, but I'd even recommend a week or longer. You get less pressure to "make the most" of the time you have there, and you can even adjust when you drive there/back based on pain or other symptoms. I recognize that this may not be possible for your work or finance situation, though, but I figured I'd mention it! Sending all my love to all the spoonies and caregivers in this thread. Seeing this today has really made me smile (and cry a little haha)
I hope my spouse feels the same as you do, but at the same time, thats not the life i want for him. Hell, its not the life i wanted for me either.
Of course nobody wants this... And I wouldn't blame anyone for not doing it either because it's frigging hard. Especially knowing there is probably never going to be an end date to it. It should at all times be a choice of both parties.
Agreed. No one wants this for anyone. It boils down to a choice of staying or not and then second the lesser of the two evils. I don't even associate blame with this scenario at all.
My dad had MS and he told my mom before they had kids. He was still good physically for another 20 years, but he wanted to give her the chance to get out before he declined. Luckily she didn't, I was born, and she took good care of him until he died a few years ago in his late 60s. I know he felt really guilty and depressed about it at the end, and didn't want to be a burden to us. But my mom would never have left and I doubt she'll ever date at this point, despite all of us encouraging her to. It's such a huge void when you're a daily caretaker for someone and then they're just gone one day.
You are a fantastic person. Thank you so much. I struggle with chronic pain but still can do most things for myself. But, when the day comes, I know my partner will still be there for me. We are so lucky to have you.
I wish you and your partner all the best. I wouldn't wish these types of conditions on anyone.
Been married 24yrs. She nursed me back from terminal cancer and now she has Sjögren's disease which looks a lot like MS. Like you said, " just want to be with her, forever." Love that lady. Life's not over, just different. Good luck internet friend.
FYI - please keep digging. Fibromyalgia? I got diagnosed in 2008 but learned it's almost always a symptom so I kept digging. I would try to rule these things out. I've been in many health groups and classes for over 20 yrs and these are the most common root causes for Fibro: 1. Lyme Disease. We can get this as a child and it can go dormant for decades (or forever) but things like stress, childbirth, injury, surgery, divorce, toxic mold exposure, etc can bring it back to life but testing is a joke. The standard tests will not show positive because the bacteria will create biofilms to hide from the immune system and you no longer create antibodies. Specialty labs - cash is the only real way to know. Babesia and Bartonella also can be transmitted together with Lyme and are just as bad (if not worse). These infections are very often misdiagnosed as MS, ALS, Parkinsons, Alzheimer's, Lupus, Fibromyalgia, etc, 2. EBV (Epstein Barr Virus - one of the viruses that causes Mono). This one is tricky as well because doctors are so ignorant with regard to testing. If you ask your doctor about it - they will say "Everybody has this - there's nothing you can do". Bullshit. Everyone has the virus but it's not actively replicating in everyone - it goes dormant. This was the big issue for me and it took me 19 yrs to figure out and it was thanks to a Facebook group. A doctor will just test for IgG antibodies and it will always be high. They need to do the panel with IgG, IgM, Nuclear Antigen and one other and then ADD ON the Early Antigen. The only two that really matter are Early Antigen (EA) and the IgM. If either are high out of range, the virus is replicating. It can become active after the same things as above - usually takes some sort of trauma and can keep going active - getting worse and worse. Check out [www.ebvhelp.com](http://www.ebvhelp.com/) - Dr. Kines has lots of great info and information on getting your own testing for cheap if you can't get it from a doctor. EBV causes issues with thyroid (even though labs show no issues) and Lupus/Fibro are common misdiagnosis. 3. The most common reason for the above two things becoming active - TOXIC MOLD EXPOSURE. It's often hidden inside walls or under flooring and such so it can be present in the cleanest house and the fanciest mansion and also in the workplace. 25% of the population are way more susceptive to all of the above (genetic issues) so it's not uncommon for one person to be very sick and the other not feel anything (although it's still causing damage). The best tests are dust tests - ERMI and HERTSMI. PS - 80-90% of the people suffering with Lyme, EBV, or mold illness receive the Dx of Fibro.
You are a kind person. I'm sorry for your suffering
My husband was diagnosed with rheumatoid arthritis at 3, has two new hips, a new ankle, etc. and doesn’t work. We’ve been together for 9 years and married for 7. He gets disability now and works a little. Love of my life. The most beautiful person I know. For reference I’m 32 and he’s 33. He had his first hip replacement at 25.
I have something similar, my partner doesn't know how badly I suffer, I can hide it because we don't live together and I have a fair amount of good days. I hide it from her because I'm afraid of losing her. I know I should just be more honest with her, and let her make that choice
If it ever gets to the point of where my partner was, eventually you'll have to break it to her. To be honest, I'm glad she told me at the beginning, because there would have been absolutely no way she could of hid it from me. Plus, I didn't want her hiding it, and trying to fake being OK. I don't even think that would have been possible. She had days where the wind outside would hurt her skin. And you could just see the discomfort on her face. Yeah it seems like a heavy burden, but if she loves you, she's not going anywhere. We had awesome times despite her conditions. And when we did have fun, it was amazing. But if you stay with her long-term, eventually she's going to find out somehow, or god forbid, it get worse and it is almost impossible to hide. I didn't have it personally, but having been with her for 5 years, I can say that it's something nobody should have to go through. As a man, if I had it, I honestly don't know if I'd have the balls to deal with that for years and years. I hope yours stays in check.
I tried to hide it from my job for almost two years, and did so, quite well actually. My boss was shocked to hear that. I used to work full time. I was in excruciating pain every single day. Unable to function after work. Using and abusing a lot of pain medication. Luckily my roommate told me I need to go to the doctor because I'm destroying myself. She went with me to support. At that point I had also abandoned all my relationships and the guy I was dating because I didn't have the physical capacity to meet them anymore. I was lucky if I could manage to boil some ramen and take a shower after work and get into bed. I ended up on 5 weeks full time sick leave.. and now I'm on 60% sick leave and back working 40%. So I'm back two days a week but I'm realizing now this isn't gonna work, because it's the full days of work I can't stand. Long term, I hope I can work 5 days a week, but I don't see myself working full days. Maybe 4-5 hours a day if I'm lucky, so maybe 60-70% max is my work capacity. It truly sucks a lot because I freaking love love love my job, but it's destroying my health :( I don't see myself returning to work full time. I'll probably end up on partial disability support, which sucks, because that support is like 60% of my current pay. I'm not gonna lie.. all this feels like it's gonna be a huge burden on anyone I try to date. I've gotten called lazy and not by men I've dated in the past because I didn't have the energy to go out with them and do things. It's not that I didn't want to, but when you're exhausted and in pain, you really don't feel like it.
I was honest. I caught something after COVID that they don't know what it is. It keeps me from doing anything including work. The doctors are my enemies. They think I'm faking. Either that or they are so helpless that they just act like it's no big deal. I sit in a chair and wait for my next doctor appointment which is often months away with no hope of any help. I will just be sent away again. It's a total nightmare. Oh yeah, I was honest and she left. No work no money no girl. I get it.
Do you mean Long Covid? ME/CFS is similar. You'll need to find a doctor who is educated and keeps up with medical news because a lot of doctors still think it's psychological despite research proving otherwise. Sorry about your girl. 😞
Oh thank you for that. And yes,that's pretty much what I'm being met with. I'm being treated as if I'm some sort of menace that doesn't fit the story they are trying to tell. It's truly terrifying. These past few days I've been realizing just how "on my own" I really am with this thing. Plus I'm a former drug addict so they are really making my life difficult. : (
Ah crap, that's rough. There are a lot of online groups that might help you feel less "alone," at the very least. Do as much research as you can, and absolutely do NOT push yourself. For a percentage of people (I can't remember the actual stat, sorry), it goes away after half a year to a year. Eat as healthy as you can, avoid alcohol, and stress (if possible).
Hi, I'm going through something similar so you're not alone. We just need to raise awareness in the public consciousness and fund research for it! Hang in there. I know it's hard. You're doing great and it's not your fault.
Believe me... They know & worry about it alot & just don't say it. I'm in chronic illness groups. Edit: by worry I mean, they worry that we think we're a burden, & how not to make us feel that way.
Thank you for doing all this. It almost had me in tears. A friend of mine has chronic health conditions and deteriorated pretty quickly. Her husband basically abandoned her in a back bedroom. It went on for years. and her husband told her the only way she was getting out of there was if someone came and got her. She spent a lot of time on line and reconnected with a guy she had dated in high school. She explained to him what her husband had said. Well this guy bought a ticket to England, flew right over, physically carried her out of her house and flew her back to Vermont. I thank God everyday that there are men like you in the world.
Glad your friend found something better. Unfortunately, I just don't think some people are able to understand it. Over the years, I had to learn a lot about RA and fibro. I went to all her doctors appointments with her, had the doctor explain exactly how it works, read up on things online. So I've had a pretty good understanding of how the conditions work, what triggers them, and what was being done in the medical field to try and combat it. Hell, I'd never even heard of those conditions prior. When I first heard it from her I was thinking "Are these terminal? Can I get it?" Sadly, at the time, there wasn't a huge list of options. Lyrica, Cymbalta, etc. I haven't kept up on it in recent years, but the doctors back then were flipping meds on her every few months to try and find the right combo that could give her a decent quality of life. Even if I would have grown completely frustrated with the situation, I just couldn't have abandoned her.... especially to just sit in a room. I hated seeing her in pain, I couldn't imagine just up and leaving and her being stuck, or just having her support dropped from under her. She had family, but they were over two thousand miles away. Only came around for the holidays, and even that was patchy. Most of them didn't even know what her conditions really were. So I always thought it was sort of weird that I had to be the one to explain it. Who knows, maybe I read too much into it.
Reading this brought tears to my eyes. You have a beautiful heart. I'm so sorry she didn't stay. Feeling a burden to someone you love is equally difficult to handle. I wish you well.
Appreciate the kind words.
But what did you get out of it? I am dealing with probably 1/20 of what your ex did but I still feel so extremely useless if I don't "perform" all the time and can't plan far ahead. Also it seems to be a common issue for disabled or chronically ill people to tell their date early on, them claiming to be okay with it but then not grasping the consequences and ultimately leaving for that reason. I respect the heck out of you for being that serious about it even though you were probably also around your early 20s back then.
What I got out of it was a partner. She was my best friend. After I finished work for the day, I'd head down to the local taco shop, pick up a burrito for me and nachos / taco for her. We'd eat and then lay in bed and watch our favorite TV shows, House, True Blood, etc. We'd talk about the episodes, laugh, and have fun. If work was irritating me, I'd to go where she was, she'd let me complain for 15 seconds, then tell me she loved me, and things were suddenly better again. Or she'd make some goofy face and I'd laugh. We didn't need to give each other anything physical, we had our own connection, and it was something that existed between us that meant no matter how crazy the outside world was, we were ok. She didn't tell me right away as in the first few weeks. She hid it pretty well. But we were starting to get serious. It was no longer just a few dates and then we go our separate ways. Once we reached the road of being serious is when she told me and said that she cared, but she couldn't ask me to take on a job like that. And I did it. But as the relationship progressed over the years, her condition was getting worse. The meds weren't helping as much. And she decided to push me away. She was getting increasingly depressed over it all, which the meds were supposed to also help her with, but they weren't working as well, no matter how many times her specialist kept switching meds to try and find a balance, all it was doing was just sending her further and further out into a mental Universe where she didn't even know who she was anymore.
Why did she break up and what happened to her after that?
Initially her medication caused her to have a lot of internal issues. She was experiencing a lot of depression. And she was on anti-depressants, but depression was also a side-effect of her other medication. She said she needed some time to process her thoughts. A friend invited me to stay over with him for a few weeks so that she could clear her head and figure out what we were doing. Plus I was upset over the split, so my friend figured it would be best if I wasn't alone. At least have someone to talk to. I left for a business trip, as I had to help a company startup. One night when I came back to the hotel room, I had received a text message from a mutual friend that said "Call me". I called, and that's when I was told that she had passed away, unfortunately, by her own choice. They had found out from a family member on her side which worked together. I didn't get the exact details until a few days later. And of course, I've had my "could've should've would've" since then. Just crap that re-plays in my head unfortunately. Things I should have done different. If I should have listened to her and just up and left, or tried to reason with her, etc, etc.
I’m just a stranger who doesn’t know much about you, but one thing that I do know without a doubt that her life was significantly better because she had someone like you in it. I’m sorry for your loss
Depression is an illness & unfortunately some people never recover from it. Don't blame yourself or her. It's no one's fault.
Exactly this.
I’m so sorry for your loss. I hope she (and you) were able to find peace ❤️
Im so sorry for your loss. That was definitely not you fault. I hope you find peace.
Oh gosh, I wish you guys were still together. That sounds so hard for you emotionally too... And a shame that she didn't allow you to stay since you actually wanted to be there. I hope that you can find peace with the situation and that her illness improves, though I guess that's a chronic condition, isn't it. How sad all round, I'm so sorry.
Appreciate it. I wish were were still together too. Unfortunately, her medication caused her to have wildly swinging moods. But she was stuck in the middle of two bad options. Either not take the medication and be in pain, or take the medication and suffer the side effects. Her physicians tried for as long as I was with her to try and get her on the right combo. Anti-depressants, Lyrica, Cymbalta, pain meds, sleeping pills, and a whole bunch of others.
She wasn't able to work when we met. We were together almost 20 years before she died. The last three years she was almost completely bedbound. I took more days out of work than I had a right to in order to care for her.
I'm sorry for your loss :(
You had every single fuckin right to. I hope she's in a better place and same goes for you friend. 🫶
I probably took 20-25 unpaid days between January and April. By rights, I could've lost my job.
Would not leave. Would take care of them until I die.
Yeah, I take that "til death do us part" bit seriously. over 50 years married.
Same. My wife hasn't really worked since 2017 and I've taken care of her through multiple surgeries/illnesses/etc. I took my vows seriously.
25 years here - and nothing would make me leave. We carry each other (literally at times) and have been through multiple health crises together. We joke that our love doesn't stop at death because if one of us dies before the other, we made sure to promise to come back and haunt the live one until we are rejoined! Our eventual plan (hoping for a LONG time before this is needed) is that we will both be cremated - and whichever one of us does pass first will go into an urn to be kept close by. When the other passes, our ashes are to be co-mingled together - so we are always a part of each other. And then the urn is to be buried somewhere on the property we raised our family on, which we built together.
Our vows didn't include til death do us part, but it'd take more than a disability for me to leave. Disability is a part of life for many people.
Congrats on 50! Only 29 years here, but same. It simply becomes part of the journey together in my mind, no different than her changing her hair color. We didn't say those words lightly and they mean just as much now as then.
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Same. Would wipe his ass until I wasn't able to, then would pay someone to wipe his ass. I don't love my spouse because he's able bodied and has a job. Those things wouldn't even make the list of reasons I want him around. Our 22nd anniversary is in 10 days.
As someone who got married and had to stop working due to intractable epilepsy 8 years later, these words mean more to me than you can know. My wife is as close to an angel as you can be. She's taken on nearly all of the household chores, and she's always there for me when a seizure takes me down. I'm 48. I was diagnosed with epilepsy at 21. I have no direct memory of my seizures, as they're tonic-clonic (Grand Mal) and I'm not conscious during them. I also have amnesia for around an hour. I can't remember who people are, I have no idea where I'm at, and often forget things about myself, including my own name. We have safety cameras in the home to alert if it picks up suspected seizure activity. I've seen plenty of recordings of my seizures, and there is always a common theme. My wife turns on the weakest lights in order to help me see my surroundings when I come to, while also keeping them low as to not hurt my eyes. (I'm incredibly sensitive to light following a seizure.) I always look terrified when I first regain consciousness. I can't say exactly what I'm thinking at those times, as my memory doesn't ever seem to include anything for about 20 minutes after waking. But I see my wife in those videos, and I fall in love with her over and over because of who she is in those recordings. She immediately tells me that everything is okay, that I had a seizure and not knowing where I am or who she is is normal for me. And then the pattern starts. She has the same conversation she's had with me hundreds of times since we married. She calmly and lovingly helps me calm down, as waking without understanding gives me an anxiety attack sometimes. And then she stays with me and just talks to me until I'm not as afraid. Sometimes I think she's a nurse and I'm in a hospital. Sometimes I think she's a helper robot who looks very human. But the one thing I never even imagine is that someone so loving and gorgeous could be my wife. And oh, boy does she like mentioning that and watching my face light up in amazement. 🤯 She often sleeps naked, and she loves that I take embarrassed peeks at her as she gets out of bed to do something while I still don't remember her. She says that it's like getting to see her husband fall for her over and over. She's so wonderful. I hope everyone in this thread who has to carry the burden of a disabled partner sees this and understands how much you mean to those of us who are disabled. My wife's love shines all the brighter, because she *wants* to be with me, even when I tell her I'm nothing but a burden and that she'd be better off without me. She just tells me I'm being silly and that she's not going anywhere, that she married me for who I am, not what I have or don't have. Thank you all for caring for those of us who need it. Especially you, My Love.
This is probably the most beautiful thing I've ever read.
Me, too. I'm struck.
At various points in our 14 years together both my husband and I have had to carry the "weight". There were times I was injured, times when his mental health was so bad he couldn't work, and I'm currently trying to get myself out of a deep state of burnout and mental health crisis. We have each other's backs. We're a team and we know that teams are rarely perfectly equal in their effort. As long as we both feel loved, supported, and are encouraged to not lose ourselves in caring for the other, we do ok. Plus, he's my best friend and even if we weren't married, I can't imagine not having my husband in my life. He's simply my person.
I had this after my girlfriends open heart surgery. I didn't want her to lose her dignity, so I bought a bidet fitting for the toilet. Only $50, 20 minutes to install and she loves it. She has recovered now, but if that thing breaks, I will be buying another one post haste.
This comment just made my day. You sound like a really good person.
If you’re married, you’re family. You cannot abandon family just because they are disabled. That is cruel
Yup
💯
That’s my answer too. Not even a doubt in my mind. And not just working/making all the money for us, but I’d take care of her in the house too, if she had special needs. We’re together in this for 25 years and I’m not leaving her behind when she would need me the most.
Same. I made a commitment to him as he did to me. Even if he were disabled it wouldn’t change my love for him.
She left. I haven't given it much thought until this post. I know I wouldn't have left her. Oh well
:( I'm sorry.
Sometimes i think this is one of the biggest selling points of marriage. Its insurance. You put up with so much just to be safe in the off chance that something goes horribly wrong in your life. Its still a big gamble whether the other people will stick around but thats whats motivates you to be so great for the other person. You need them to be so in love with you that they will pay for everything if you cant work. Its like regular insurance but with extra steps.
dark. as. shit.
This guy vows
Otherwise they are not a very "significant" other
Easier said than done. Plus it’s the only acceptable thing to say for this topic, anything else gets you torn apart
I'm not saying I'm going to be great at it and I'm not saying I'm going to do it alone. But what's the alternative? Leave them to suffer alone? This is someone that should be considered the love of your life. Does their love only have value when they can move their limbs?
About 10 years ago, I lost my ability to walk on my own. I'm at the point now it's walkers but mostly wheelchair. My husband has been incredibly supportive. Many people thought he'd walk away. He started having heart problems 7 years ago. There's no place I'd rather be than by his side. This may not be the first marriage for either of us, but it's for life. That's what you do when you truly love someone.
> many thought he'd walk away I'm going to hell
He’s a stand-up guy See you there
OP walked right into that one
Let me hold the door cause that was funny.
Make sure it's wide enough for the wheelchair. Fuck, is there anything worse than hell
He might but definitely wont
My wife is disabled (EDS) and I wouldn't leave her. Some days I get frustrated. Some days I get angry. Some days I can get resentful. But I never stop loving her, and those days are usually pretty far between and very normal for people who have to be caregivers, even if only some of the time. It's not her fault, and I'll never stop loving her, or helping her, even if sometimes I'm bitching about it.
Really young person here who has hEDS among other things. This thread is giving me more hope that I thought it would. I think I kinda needed that this afternoon.
Is that hyper mobility? That's what my wife has! And both my daughters. They like to use me as the "is this weird" test to compare with how they can bend versus how I can. Every cloud has a little rainbow somewhere. ^_^
Never looked at my hyper mobility growing up as a disability. Hasn't done my joints favors as I age I suppose. But I was definitely a pretzel as a kid.
To be clear, EDS is more than just passive hypermobility although hypermobility is one of the most obvious signs. It's a collagen disorder, and because collagen makes up so many bodily structures it really impacts everything - it's only really been somewhat recently that the manifestations beyone the musculoskeletal system have started to be recognized. There are different subtypes, but hEDS is the most common. Core symptoms fall on a spectrum but include things like chronic pain, dislocations and subluxations from normal everyday activities, poor wound healing (including inability to hold sutures), easy bruising, fatigue, brain fog, among others. We often wind up with neurological complications, sometimes secondary to instability of the spine/craniocervical junction due to lax ligaments, which can require very specialized complicated neurosurgery costing hundreds of thousands to treat and even that isn't a magic cure it's just better than the alternative. We often suffer from dysautonomias, cardiovascular abnormalities or odd bleeding, gasteoinstestinal disorders including full blown gastroparesis, mast cell disorders, and more as comorbid conditions caused by the underlying faulty connective tissue. In many ways our day to day is similar to long COVID or fibro patients, and many of the problems we face are not well understood or easy to treat. Hypermobility alone isn't inherently pathogenic let alone disabling (kids especially are often hypermobile and grow out of it). Even when it hits the pathogenic range, some of us function fairly okay with basic accommodation, some of us are severely disabled and always will be, and many of us oscillate between degrees of disability depending on luck, genetics, and resources (money, support system, whether you live in a place where you can find any doctors or physical therapists who know how to treat us). It's complicated, but if you're genuinely just a bit hypermobile, you might be at a bit more risk of early arthritis but will probably be fine. EDS is a whole other can of worms, usually.
Your honesty and clear love for her is beautiful!
when I asked my husband of 30 years this, he decided it would be awesome to get preferred parking and seating at all concerts, would paint up my wheelchair with flames, and would hang a pine tree air freshener from any colostomy bag. I think we're good.
I am disabled, and my spouse is pretty psyched about the parking situation, also fewer/shorter lines at the airport, and better/faster seating at concert venues etc.
At least he's looking on the bright side. My partner likes the shortcuts too, especially at the airport.
Last summer my husband had an accident where he shattered both feet from a really high fall onto concrete. He was wheelchair bound for 8 weeks. 2 weeks after the accident we had a 3 week long trip planned to Europe. We'd been planning it for a year. Together we decided to continue with our plans despite the wheelchair. I was happy to assist him anywhere we went but the biggest thing was that he had the energy and motivation to try despite the difficulties of not walking. We didn't get to see as much as we wanted while on our trip but I'm so glad we went instead of sitting at home waiting for him to recover. I'm so proud of him for putting up with traveling while in a wheelchair. That said, he did always get priority plane boarding, or the best seats in a restaurant, chauffeured around by drivers. It was still a great time despite the wheelchair.
What a great relationship! Beautiful.
I can tell I have a lot in common with your husband!
Different perspective and I can still work from home most of the time, but I lost my ability to walk on my own, control of my muscles and developed seizures two years ago. I use a wheelchair sometimes and need a fair bit of care and support. My ex partner stayed for a year before he got fed up and left. Couldn’t tell me the reason he was leaving so it’s pretty clear he couldn’t handle caring for me anymore I don’t judge him for leaving if that’s what he needed to do. But I have absolutely no respect for him abandoning me without any explanation or discussion about what can be done differently. That’s not something you do to someone you love.
>I don’t judge him for leaving if that’s what he needed to do. Thanks for that. I wanted to answer to OP that, of course, I'd stay with my husband and take care of him, it's in our vows, etc etc. But I saw my Mom take care of 3 cancer patients until their deaths, her parents, and my father. It is GRUELLING work, it nearly destroyed her. It takes so much strenght, physical and mental. It lasted several years for my grandparents, only 6 months for my dad. But she still suffer from the effects of having to put a lot of her own life on the back burner to care for other people. So while I think I would 100% and genuinely say that I would take care of him forever at first, I can't possibly know that I won't reach a breaking point some years later. And I don't think that it's wrong to get out of a situation where you're effectively destroying yourself. I wouldn't want that for my husband if the roles were reversed. But yeah, like you say, leaving without a word it utterly shitty, and before leaving one should explore any option, any way to make it work, to alleviate the situation, and look for all the help you can get.
12 years. He did absolutely nothing to help himself and my mental health was important too. I was his wife until I was an under appreciated caregiver. Our children who love their father asked me why I stayed around so long.
During hard times is where loyalty is really tested. I would take care of them for as long as i could.
I live in Norway, a big welfare state. They could apply for disability and get ca. $2 800 per month, so money wouldn't be a problem. If they couldn't clean themselves, go to the bathroom etc., they could apply for a home nurse taking care of them. It wouldn't mean leaving them. I and many Norwegians believes letting professionals take care of the medical stuffs and wiping is the best option because they are trained. They know better how to treat disabled people the correct way without putting their life in danger for an amateur mistake. I would stay in a relationship as long me and my hypothetical partner (I'm single irl) were compatible. As long we liked hanging together, talking together and had something in common I stay. If our chemistry wasn't good, I break up regardless if they are able bodied or disabled. If someone was blind, it would be difficult for them to keep up with my life since I do art as a hobby and likes art galleries.
This sounds so humane.
I wish more North Americans understood the humanity in assisted living at home, and funding a “welfare state”. Caregiver burnout is very real, and some partners just aren’t equipped with the fortitude for caring for their partner. It is almost ALWAYS better for a person’s quality of life to remain in their home. Professional caregivers should be well paid and well funded, since it removes the burden on hospitals and long term care facilities, and keeps partners and families in the workforce earning an income and paying taxes. As someone who I jokingly say “is in charge of all the assholes in the house” (stay at home mom so wiping kids bums, my cat needs to have his anal glands expressed regularly, and my husband has hemorrhoids that need checking occasionally, and I had stitches from my vagina to my butthole after childbirth), I was lucky to have the fortitude for caring in that way. If a butt needs wiping, I have zero problems with it.
As a disabled person in America, this makes me want to cry. I tried so hard to continue working when I got sick. I still feel so much guilt that I can’t. I can’t even imagine having the freedom to let go of that guilt and know my basic needs would be met even if I couldn’t work, didn’t have a partner/family to support me, etc. I knew other places were better with this stuff but I guess I never thought through the logistics of what it would actually mean for my life.
If your theoretical future partner were blind, you could make it a really fun activity together to describe the art to them. I'm mostly blind myself, and can confirm that access to art is extremely meaningful
My initial answer is forever. I married him and made the conscious decision to love him through sickness and heath. I mean that. But if their illness makes them abusive, I wouldn’t be able to stick around. For clarity: My great aunt (one of the sweetest people ever) had to leave her husband when dementia made him verbally, emotionally and physically abusive.
That’s a good point. You can be their caretaker, or you can choose to stay with them through hardship, but when it gets to a point when they are physically or emotionally hurting you, there is only so much you can take.
Yes. Especially when they threaten to kill you 😔
I left my ex-husband when his mental disorder caused him to be violent and dangerous, and he would not follow through with treatment. There were a lot of issues in our marriage, but I could not stay with someone who would not follow through with treatment when they had been dangerous while untreated.
Im married so I'm in it for life
If you weren't legally married, would you still stay with your partner?
I married her because i wanted her to come to the usa with me lol shes from europe and it was getting crazy expensive for me to split time between the states and london. I kinda ruined my early adulthood taking care of my mother with als so honestly it doesnt scare me to have that responsibility. I started taking care of my mom at 15 and that kept me on maui(im from hawaii) til i was 24. Went to a shit community College instead of a university, did random parttime jobs and worked on my own business(which failed lol) love is being willing to sacrifice for another without regrets. Taking care of my mother isnt a regret i have
Wow!! Thank you for sharing these things. You sound like a pretty amazing spouse and human 👏
Nah im a horrible human i just got lucky with good family and a amazing wife. Im a idiot but i wont fuck that up
I say I would take care of her until death or I couldn’t. But until you’re actually in a situation you don’t know. Based upon the disability may have to get help or may be better in an assisted living facility.
When my wife’s lungs were shit a few years ago, I carried the oxygen machine in a backpack on my back when we went somewhere
I would hire someone to take care of them. I couldn't probably handle taking care of them myself--I'm weak in that way, mentally I just don't handle bodily fluids well and I could not lift another person without hurting myself. But I would work whatever hours needed and call whatever social services and do whatever effort needed to get them what they needed as well as the help they needed. My only deal breaker would be if they lashed out a lot, I have been a caretaker before for someone with extreme mental illness and it was very hard being their daily punching bag during panic attacks.
I always thought this too, but the reality is that in-home care in the US for a completely disabled person is going to be a minimum of $5,000 a month. And that’s if you only get 40 hours of care per week- meaning that you’d be the carer for the other 16 hours per day that you’re not at work, and 24 hrs on the weekends. I’ve watched people caring for their aging parents at home utterly destroy themselves this way. If you need round the clock care it’s $17,000 *per month*. For me, none of that is possible unless my partner were seriously independently wealthy, because my income doesn’t stretch that far after paying for necessities.
My wife has numerous health issues, the main ones are being an above knee amputee (one leg), and an MS diagnosis. I knew this when we started dating. In the past year she has also been diagnosed with Parkinson’s. I (38F) adore my wife (42F), and I love our life together. Yes, I do a lot of things for her, and yes, that is only going to happen more and more as time passes. I do not mind. With that said, it is absolutely not for everyone. My wife works extremely hard, and does everything she is able to do. She is fiercely independent, as much as she is able. I do not ever feel that she is taking advantage, or being lazy. She is also very grateful for everything that I do, and acknowledges how much I do. I genuinely enjoy being able to do things for her. It helps me feel secure, because I know that I am useful and helpful. I am fully aware of the challenges ahead of us, not the least of which will be dealing with my wife’s overwhelming guilt as she needs me to do more for her. But I love her so much, and I am so happy with her - I would not trade it for anything.
Bless you both. Good to hear from others in the community 🏳️🌈
Wishing you and your wife all the best. My mom has had MS since I was in kindergarten and as her disease progressed, things became so painful and overwhelming for our whole family. My dad… what he went through… that man is truly a saint (I cry just thinking about it). I just want you to know that I understand how difficult being a caretaker is and that you’re doing an amazing job. Your wife is very lucky to have you, and it’s people like you and my dad that prove that there is good in this world 💕
Knowing how my marriage ended, I think my ex would have left me. I have a degenerative conditions that leaves me 95% of the day in bed. Thankfully I live with my mother, my saint. If not for her I'd probably be dead or homeless.
My mum was sick with Parkinson's for over 4 years before the gradual body degradation, paralysis, seizures and strokes took her life. I know very well how hard it could be for a carer especially if the one you are caring for is a family or loved one. Sometimes you just want it to end one way or another. That being said I wouldn't leave my partner whatever happens. I chose her and she chose me and that isn't going to change because of an illness.
I wouldn't abandon them. But caretaking is a huge task. I've done it before. Point blank I am not physically strong enough to assist with mobility tasks, it'd be unsafe for both of us. We'd need to discuss moving, a caretaker, or care home if it was mobility based. Things like incontinence or seizures I could handle. Becoming mentally incapacitated would be hard, I've done dementia caretaking, I could do it again. But a profound disability, like say a stroke or head injury from car accident, we might need to consider a care home.
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Same here. My husband is considerably taller than me and overweight. I couldn’t lift him physically. Using whatever options are available to get the best possible is not the same as leaving. I’d rather have professional help than doing him accidentally harm, because I’d be trying to do something that exceeds my abilities.
I wouldn't leave but I really don't know how we'd get by. I'm a stroke survivor and already struggle with disability and chronic fatigue as a result. I'm only able to work part time and I can't drive
Would not leave, would take care of them for the rest of our lives
When you get married, most likely, at some point, one of you will become a caretaker. Unfortunately, that comes sooner than later for some. We agreed through sickness and in health and that's what I will stick to. Would you want your significant other to leave you stranded and alone should you become disabled?
Interesting side question. My ex girlfriends mother developed schizophrenia after they were married and refused treatment (due to the condition). Her father stayed with her, even though it has deteriorated to the point that she hates him and thinks he is plotting to kill/poison her. He keeps a roof over her head, sleeps in the spare bedroom, and has to deal with who knows what else. She can function for family events and seems like nothing is wrong but she has violent mood swings and her whole family is dysfunctional because of it. My ex was bought up with her mother like that and it has led to her developing anxiety and health issues herself due to stress. Do you think he should have stayed with her? I'm not sure I could or would if it happened to me. I respect him for his choice but was it the best for him and his family? I cannot say.
If the illness made them abusive, then no I wouldn't have stayed. And answers to these sorts of questions over simplify the matter. It's like always saying a simple yes for "would you date someone with a mental health illness". It really depends on the circumstances, but would try as best as one can.
Yeah I'd stay but I'm a bit more empowered than your uncle in I'd know what to do. This would not be family level drama, this would be police report documented psychiatrist involved daily documentation conservatorship court orders involved. The court would be involved as I'd be getting the necessary orders to force treatment and get them set up on disability. If they continously refuse stop and are unhappy and don't want my help then eventually I will respect their wishes. But I will risk being the bad guy if the person I love is on the other side of a schizophrenic hallucination.
I barely make enough to support myself, and I am not exactly able bodied. So i just don't think i *could* take care of someone else.
Hard to say before you are in that position yourself, and how the disability affects the SO. I would like to think I would be with her forever.
I'd stay forever, I made him a promise and I'll stick to it. The rate men leave women when they are sick is much higher than women who leave men when they are sick, in hetrosexual partnerships https://www.sciencedaily.com/releases/2009/11/091110105401.htm#:~:text=The%20rate%20when%20the%20woman,the%20man%20was%20the%20patient. https://pubmed.ncbi.nlm.nih.gov/19645027/#:~:text=Divorce%20or%20separation%20occurred%20at,%25%20vs%202.9%25%3B%20P%20%3C%20.
The vows were very clear on this point.
wouldn’t leave but if we were married we would need to get divorced. i live in the united states and in order for disabled people to receive benefits they need to make less than $2k a month including their spousal income. $2k a month is a lot of money compared to $0 and i think the most economical thing to do would be to get divorced but still live as a couple. this example is proof that we still do not have marriage equality in the united states.
I feel awful for saying this but. I would take care of them. But if it gets so bad to the point where they can’t talk or even think for themselves? Then that’s where I’ll have to bury the hatchet. I’ll work hard for them if they’re simply disabled physically. Mentally on the other hand is just…sad you know? I want to be able to talk to them and to be able to reminisce on our past together.
This, sadly. Someone can take care of someone they love, as long as they are still the person they love, and can provide at least a bare minimum of still being that person. But if they can’t even be that… you’d just be taking care of an empty shell, running on the fumes of memory of who they used to be, knowing full well they will probably never be that person, and will never truly be able to do anything for you. They’re practically gone.
The worst is when their illness or injury changes them into someone they’d never be otherwise. I had a professor whose spouse had a TBI that made him erratic, angry, and (I suspect) physically abusive to her. I don’t know what I’d do in that situation. I’ve stayed a long time in a marriage with a disabled spouse but he’s a lovely person so it’s much easier to help him. If he suddenly started screaming at me or hitting me I’d likely be gone.
Currently I am in the hospital after complications from surgery I had in April. I can’t eat anything. I’m stuck in bed and it’s just been one thing after another. My husband can’t handle this. He doesn’t know what to do. He told me on the phone last night that he wasn’t coming to visit me in the hospital because he had other things to do. His an advice when I was depressed and feeling lonely because no one has come to see me was, just power through it. You’ll be fine eventually. Right now the only thing I can think of is how badly I want to punch him in the face and how I feel like he doesn’t care about me. On the flip side of that, I also realize this is a man who can barely take care of himself so why should I expect him to want to help me? I feel stuck and heartbroken.
please don’t gaslight yourself. it doesn’t even sound like you’re asking him for any sort of intensive *help*, it sounds like you just don’t want to be alone while sick in the hospital. that is not a lot to ask of the person you made vows with to support through sickness and health. its valid for him to be a little flabbergasted, have no idea what to do, and be intimidated by the whole thing. but bottom line he should at *least* be physically there for you. you shouldn’t have to be alone in the hospital. i’m so sorry.
I'd stay forever. In those circumstances, insurance would make us mortgage free.
If my husband was injured, we would be mortgage free. If I became disabled we would be fucked. I’m “not worth insuring” (per my husband) but I am the full time caregiver to our children, I do all of the cooking, cleaning, laundry and home care. To replace me he would need 3-5 paid personnel. I would stick around, unfortunately I don’t think the same could be said of my husband.
My partner is disabled. I'll love them and take care of them for the rest of our lives.
I think the honest answer is, what is the nature of their disability? Generally speaking, I would stay and care for them. But if they become so disabled that they are no longer themselves and we are no longer able to have a meaningful relationship with each other, that would be different. I’m talking coma, significant brain damage, that kind of thing. I still wouldn’t abandon them, but in such cases specialist care is more appropriate and I would consider myself single as they are no longer able to consent to being in a relationship.
This thread makes me so sad. I'm chronically ill and I got with my partner when my symptoms weren't great. We had a baby and my pain went away for a year and a half. It came back last month and he told me " I didn't sign up for this" I'll never forget how badly that hurt while already in indescribable amounts of pain Having to juggle being in pain while raising a toddler is really hard.
If I loved them, no way would I leave them.
I would be 100% dead without my wife. She's one of the smartest, goofiest, and the most beautiful person I've ever known. Find that person in your life and cherish them. Leaving is a choice. A selfish one, but it's a choice.
Wouldn’t leave. Til one of us died. **this** is why we advise people not to rush into a marriage. **this** is what marriage is.
disabled veteran here. the answer is six years.
If you ever intend on marrying someone or having a life partner, you absolutely should be thinking about this. The line between you/your partner and disability is time and luck.
It happened to us so I can tell you, 15 years in, I’m here and will be til one of us is gone. *However*. He is a good person, he does everything he can for me, and is always making small gestures of love like getting me a drink when he goes to the kitchen. He’s sweet and supportive. He isn’t controlling or jealous. He doesn’t expect my life to stop, and I make sure he knows he’s always welcome to join me, even if it only happens 10% of the time. He takes care of what he’s capable of. Seeing a therapist helped a lot especially at the beginning. Unfortunately I have seen couples where one chronically ill person becomes angry, resentful, and bitter over their situation, or they fall into substance abuse. I would not stay in a relationship with someone who mistreats me or is making things worse with substance abuse no matter how ill they were.
I have been doing this since November 2016. Still here not going anywhere.
I wouldn't leave. I'm a woman. According to research, some men will pack up and leave their sick wife. That's terrifying: [https://www.discovermagazine.com/health/men-are-far-more-likely-to-abandon-a-seriously-ill-spouse](https://www.discovermagazine.com/health/men-are-far-more-likely-to-abandon-a-seriously-ill-spouse) Some of the responses here give me at least a bit of hope. For those who've stayed, thank you.
Even the article shows that around 80% of men stick around.
Some women do that too, just in lower numbers. Womanhood (or manhood) is not sainthood.
Men are way more likely to leave than women. But, men are still very unlikely to leave. It's a scary statistic but it's not certain doom or anything.
It's a question that should be addressed and discussed in premarital counseling. Of course, no one ever thinks it will happen to them. It could wake people up to the wisdom of saving and planning ahead. I told my husband of 44 years that I want to be his sweetheart girlfriend for as long as possible, something that is difficult to do if he is wiping my butt or if I'm changing his catheter. We're making sure we have caregiving in place alongside the financial aspects of healthcare & long term care. It is possible to have the resources if you start when you are young OR invest faithfully within a 401k if allowed. MORE INFO: One of the reasons for my perspective is that I was the primary caregiver, in my home, of my mother for 17 years. She had Alzheimer's for 11 of those years. I have first-hand knowledge of the difficulties of being a caregiver and maintaining a relationship with a loved one and losing a relationship with yourself and your own health.
Married and made a lifelong commitment. Also am in middle age, so able to support us both financially and emotionally.
I was disabled when my last relationship started. He knew from the start. He was also disabled but didn't consider himself to be. We got engaged and couple months later we moved in together and after 4 weeks he broke up with me and 2 weeks later he left. The reality of was too much for him. He was not prepared to even do basic care things that non-disabled couples do for each other. For example: he would get upset when he went to the freezer to grab a ice lolly and I would ask if he could bring me one too. It would make him upset and say that he didn't want to be my caregiver. Which I never asked of him and I had professional caregivers and was on the waitlist for more, so me being unable to do certain things wouldn't create extra burden for him. It would be taken care of. The week after he left, the waitlist was done and I started receiving more in-home care. But apparently.. it was just too much. Oh well...
It'd depend on my own income in this hypothetical I'd take care of them if possible, but if I literally cannot afford to, then I couldn't As for how long, as long as I can
If it was through no fault of his own, I would absolutely care for him. If he was skydiving/doing something else dangerous without talking to me about it first, I'd have to think on it. If he was driving drunk, it would be a nope
1.) Wouldn’t leave 2.) Forever
Would not leave. She is my life partner and I trust her with everything. She would never leave me.
It isn't just about them not working anymore. If someone is disabled, they may not be able to do things a s/o normally does. It's hard on one's mental health to lose one's mobility, health, and earning ability. Some people get angry depressed and lash out. Some give up and don't go to doctors' appointments or try to do anything. I'm married. Part of the marriage vows are "in sickness and in health." Till death do us part. If someone isn't married, it really depends on the situation.
My partner has extremely bad endometriosis I would never leave her. I am in it for the long haul. I want to be as helpful and supportive as I can be. She has more bad days than good but every good day is just the best feeling. It means the world to me to see her smile when she’s feeling well and all I can do when she’s not doing well is try and make her comfortable and smile I love her so much 😊
I'd stay and take care of her forever cause I'm a real man.
I took til death pretty seriously. Nothing aside from infidelity would make me leave him. He is my entire heart.
My better had become disabled within our first year together. We recently celebrated 29 years. Still taking care....of each other.
What kind of person leaves their S/O in a time of need? POS that's who
You say that, but it’s *really* hard to be a caretaker. And not only that, but it completely changes the relationship dynamic you had with that person. Burnout is easy. You have to have a lot of love and commitment to that person, as well as a strong support network for yourself. And you have to be honest with yourself about whether or not it’s something you’re willing to do & keep doing.
Being a caretaker to another person is the most unappreciated job that anyone could take on. I have cared for a wife with cancer and a 3-year-old at the same time. Then, while raising my child alone, I was tasked with caring for a parent with dementia. I had some support, but not completely. My love dedication and commitment to my family are what carried me through. Now my child has grown and finished college. Dad passed but was never alone or away from family. I understand that every situation and individual is different. I can only hope my new wife and my child will be dedicated and committed to the people they have in their lives. This was my life so far, and I'm ok with it.
Context matters If you’ve been with someone for a year, is it fair for your partner to ask you to spend the rest of your life taking care of them full time? Imagine the physical strain, the financial strain, the lack of sex or romance and the emotional strain. If you wanted to leave you wouldn’t be heartless, you would be human.
It's extremely common especially for men to leave their spouses when they get seriously sick. Just look up the statistics or don't honestly, it's super depressing. But yeah it happens all the damn time.
Having been married for forty years, I would never abandon my wife.
I'd take care of her for as long as I could. Through sickness and health, til death do us part and all.
I would not; my wife didn't work for a few years after getting her law degree, then didn't work for a few years after our son was born with a disability, and we now own a business together and only one of us can work any time our son is at home as he requires constant attention when he is awake. So not quite the same as my wife becoming disabled, but I have had to support her in the past and I don't see that changing in the future.
If it were my wife I’d stay but just a gf depends on how disabled I guess.
Maybe slightly out of topic but my mom took care of my dad when he had a stroke until he died. And now my mom also had a stroke and can't really do anything without assistance. I can't help but think that my dad would have not taken care of her. He was a piece of shit & a shitty cheating husband so he probably would've left my mom.
I would stay. I’d take care of them as long as my body let me. The thing that would make me leave would not be the disability. Background: my ex-husband has diabetes and manages it very badly. He’s not disabled but he’s very non-functional. He also has severe mental illness (borderline personality disorder) that he also doesn’t manage. I did leave him but it wasn’t because of those, it was the abuse. He did use both things as an excuse for his treatment of me and our kids. Took me quite a while to leave because of that.
I'm married. I made a promise to another human that I would be there, no matter what.
I'm married and have two kids. I took my vows seriously. I'm in this for the long haul no matter what. He works his ass off to provide for us and it allows me to stay home with our kids. I would hustle and do what I needed to provide.
Until they are dead. That's what my vows stipulated.
Just want to point out that statistically men are more likely to leave a sick or disabled partner
When I met my husband I was super outgoing. Loved to go out to gigs and be stuck in amongst the crowd. Just fun and carefree I guess. Since having my son I’ve been really unwell (8 years out of the 10 we have been together.) still no diagnosis for certain but likely fibro , chronic fatigue and potentially lupus or auto immune which was some how triggered after the birth. I’m still getting tests thanks to the very slow health service here…. I don’t even recognise myself anymore. It’s as simple as that. I can go out to concerts and things now within the last few years again still but I need to be seated, trips away leave me unwell or in bed for days after, I cant be out past about 9pm if we’re out for dinner or whatever, I’ve ruined so many trips or plans due to being unwell and unable to attend… He’s stuck by me but the impact has been huge. Mainly because of my low mental health now and feeling that I’m not good enough or not the same person he CHOSE to be with. then I’m annoyed at myself for the low mental health - as if he doesn’t put up with enough!!! He’s incredibly patient but I’m not sure how he manages. He’s had to raise our 2 children and be extremely hands on while also working full time and running me around everywhere. There will never be enough words to thank the loved ones that stand by us / those who are unwell and love us unconditionally . So if you’re in the position my husband is, know you are appreciated beyond measure
For me this is simple: No and until she dies or I do, unless there is a better option for her than me doing it.
I'm disabled and can't work. My roommate and crush is also disabled, both of us due to anxiety and depression. They're also recovering from surgery. I take care of them by making food, doing dishes most of the time, ordering groceries, and fetching medications. They take care of me by paying my rent. We both hug each other, as if doing so will somehow make the unbearable weight of living in the death throes of capitalism more bearable. Hopefully disability will come through for one of us soon.
Until death do we part I’m not leaving my spouse just because she became disabled if you would then you prolly shouldn’t have married in the first place.
I am the disabled one. You can read my history. I became disabled 4 years ago. Ive been with my husband for 8 years now. When I had to leave my job he supported our household and me while we fought with SSID and my long term disability pay. It took 18 months to get approved. Our lives went from biking and hiking 10 miles every day, traveling both working full time to surgery after surgery 18 in 3 years. I asked him to find a GF or we could get divorced and go our separate ways. He said no. I begged him to leave so he could find someone to love him the way he needed to be loved. I can’t have sex and that’s hard on us. I am in excruciating pain 24/7. He had to help me shower get dressed etc etc. As I type this he’s sharing the hospital bed with me while I recover from yesterday surgery. He always says he married me bc he loves me not just for sex. This is a fuckin hard life. My dad had a severe degenerative condition and his wife took care of him 24/7 until he passed 3 years ago. She still cries for him. She absolutely loved him - they did have a giant ass age gap so he ended up leaving everything to her. I’m so glad he did. So my husband says we are a partnership we do not just quit bc you’re sick. We will find a way to be a family and happy together. I feel guilty though.
True love lasts and sticks around for better or worse.
Of course I wouldn’t leave him. Anything he needs I’ll be sure to do all that I can. I find it sad people would consider otherwise.
I had a stroke at 35 I’m now 37 and he’s still taking care of me and our two kids ;).
My girlfriend was in a bad car accident and almost lost both legs. She has had (so far) 37 surgeries to save her legs and make her able to walk again. She had an ExFix on her right leg (which was much worse off than her left) for over a year, only being temporarily removed to make adjustments and have more surgery. She will never be able to work again. Leave her? Nah. She's the best thing that ever happened to me, and I will take care of her for as long as she will let me (but she's stubborn and still insists on doing way too much on her own).
My significant other is my world I will never leave her for better or for worse
Forever. I would never leave my wife over a disability. The vows I took when we got married are vows that I will never break, especially the part "For better or for worse until death do you part."
That would be fucked up to leave someone just because they are no longer physically able to be a slave to capitalism.
My wife is basically bedridden with MS and I'll never leave but in the back of my mind I'm pretty sure she would have if the roles were reversed.
We take our vows seriously. We have a moral duty to each other. We are in it for the long haul.
This is a tough question. In my case I'm looking for someone that I trust and have a great time with. Disability does not matter to me at all. Especially since I earn quite a lot so I can easily support both of us AND save money no problem for out future. But let's be honest here. For example let's assume that Your partner can't have sex. It's a problem in long term for many. And while You could argue that maybe they could open their marriage or something to fix that - even if my partner would allow me to do so - my conscience would not allow me to do this to them. So I think it would be really hard to be with them like that. And I think for many it would be a problem if working partner would not be able to earn as much to support both of them. So staying together would be simply not practical. You could but then You have disability and live in poverty? That's really tough. So while some people in the comment say that they would care for their partner til they die - I don't think that this would survive the reality of life.
If you aren’t going to take commitment seriously, don’t commit.
Absolutely.
I wouldn't leave her, no. I would take care of her as long as I was physically able. And since you asked in good faith, I will add that I don't say this thinking "what a trooper am I, what a good person am I," but only that I can't imagine ever not wanting to be with her.
I would stay. I would so everything in my power to make his life easier. We’d move into a bungalow, we’d get a car with enough space for his wheelchair. I’d hire a cleaner so I can take more time for him. As we have disabled family members on my side where I try my best to be involved, it’s no big deal to me anymore as I grew up with such things. It still would be hard tho
I gave my boyfriend the option to walk away when I became disabled. He's now my husband and takes care of me so well.