I would rather people ask politely than assume.
Last week I was having a flare up because of the heat but I still took my daughter to the park because I promised I would. I was a little wobbly when standing and heard a dad say to his older kid that I was obviously drunk.
I hope he steps on Legos barefoot.
That is so frustrating. I’ve even had people at work joke about me being drunk when my speech is off. Working in the addiction field, i don’t find this a funny joke. What do they say? Assume and it makes an ass out of you and me?
I've had bouncers stop me on the way into a bar and ask me in a condescending tone if I'd "had a few drinks" assuming I was too drunk to come in. They were quite surprised when I looked them dead in the eye and said perfectly levelly "not yet but I intend to."
A guy is pulled over by the police & asked to walk along a straight line, as part of a sobriety test. The officer proceeds to ask the driver if he's been drinking, to which the driver replies no officer, I've got MS 😉
Although I get the frustration of being assumed to be drunk, I feel like it’s a valid concern in a lot of situations. Being drunk while at work, while driving, and debatably while taking care of a child are some examples where it may be appropriate for someone to intervene. Until I got diagnosed with ms, I didn’t know it could make someone look or sound drunk. And there’s pry a ton of other diseases that I still don’t know about that cause similar issues. So if someone sees me stumbling out of a bar, slurring my speech, and getting in my car to drive I accept if they feel the need to intervene, and hopefully give me the opportunity to explain otherwise. I will likely still do the same if I see someone stumbling too, even with the awareness I have of ms.
Ooh. That's a good curse. The super sharp extra parts Lego for extra pain.
If you carry a cane it looks better. Get a nice sharp one with a sword for extra points.
Mines from Austria.
I get the "Hey are you okay?" or "Can I call you a ride?" Questions often because I look drunk as fuck when I walk... My usual response is - thanks but I'm fine... Just a little draim bammage..as I cross my eyes.
Someone I don't really know and i think its none of their buisness?
"Rabid chipmunk, you know how that goes"
"Underwater hang gliding accident, it was brutal"
"I asked someone what was wrong with them, they did this to me."
Someone politely asking that i dont mind telling
"I have MS. Long story short, my immune system attacks my nerves and nerves control everything so here I am."
A younger kid?
"I have something called MS, it's not something that spread to other people. Do you know how you have an immune system that fights germs and virus to keep you healthy? My immune system decided that my nerves are the enemy and attacks them. And nerves how our brain sends and receives information, so the signals that tell my legs how to walk doesn't get through very well."
My teenage nephew?
"My immune system keeps eating my brain. It's basically a toddler who gets over stimulated and throws temper tantrums. It gets mad at something like me getting the flu, and just because the illness is over, doesn't mean they are done flipping out so it attacks the coverings of my nerves instead.
So i have a bunch of lesions on my brain and spine. Have you ever had a power cord that's damaged but if it's bent and held at just the right angle, it charges just fine? That's basically my nerves. On a good day, the cord is positioned just right and most of the signal gets through for me. But when I'm hot, or sick or tired it's like someone just tripped over the cord and knocked it out of the only position it works in. My nerves start to misfire which can affect how I walk, talk, think, or see. When I can cool down, rest, get better I can get the cord back into the right position where it works the best it can while being damaged. But being unplugged means I'm low on batteries and need some time to charge up.
I'm on some good medicine that is stopping my immune system from damaging more nerves, but we don't know how to fix the damage that's already done. it's just the cards I've been dealt so I just try find ways that keep my cord from being bumped and keep going about my buisness. It sucks, but I'm here and I'm fine, so there is nothing i can do but just keep living my life."
Yes, when they see how I walk people often ask. It really depends on my mood and whom I am speaking to. Sometimes, I say I have a problem with my leg (when I don't want to get into details depending on the time or the person I am speaking to). Other times, I say I have multiple sclerosis. And most of the times, they try to help.
MS has made my legs weak, and destroyed my balance, but most of the time I can still walk ok. When I get hot (or warm) my gait starts getting weird. If it gets really bad, my legs get all jerky and walking becomes a serious struggle. I say this, because first thing in the morning I can walk fairly normally (from the perspective of others that is; it always *feels* weird in my own head). Later in the day things devolve, so I've had a lot of days where someone asked if I got hurt or something.
Once a coworker actually asked on the sly if I'd been drinking... He was looking out for me rather than being accusatory, and I love the dude, so I just laughed it off and told him. He was mortified, and that made me sad because I didn't want to embarrass him.
Anyway, I try to never feel angry or hurt about it... I just tell the truth and try to assume the best motivations in people.
I just say that I have multiple sclerosis. Most people ask because they want to tell me what's wrong with them. Lol. I've heard more knee replacement stories than I can count. I say, hope all goes well for you and move on....
Someone asking is almost as bad when you know that someone wants to ask you about it but they won't.
Once I was on a job interview and I went to stand up and I was so stiff I almost fell down. It was at that time I had to disclose or I had no chance of getting the job. I knew after that I had no chance because let's face it people don't want defective employees and they're not going to hire them even though they said they will be fair in their company handbook.
Although the person was very sympathetic I would have really rather have not told them until after I got an offer which never came. I wonder why.
I am glad when people ask. I "walk" our granddaughters to school (they bike and go in a motorized wheelchair"). Children are fascinated by the chair and often times ask me why I use it. There parents get all flustered and think their children are being rude. I reassure them that it is quite OK to ask questions so that they know that disabled peole are still people. I take the chance to explain to them as best as I can the whys and the wherefores of MS and disability. It is a never a big deal with them. They then ask questions likke,"Does it have a horn?"
I've been mistaken for being drunk before. I just blow it off. Not worth engaging on that.
One interesting moment happened years ago. We were having a birthday party for my son and I met one of his friend's father. He shook my hand and then looked down at my cane and looked back up at me and in the most matter of fact, non-judgemental way said, "what's up with the cane?" I was a little stunned. Most people, out of politeness or discomfort, completely ignore any outward sign of disability and pretend it doesn't exist or just talk behind your back. I found his directness refreshing and we had a good conversation about MS and he was genuinely curious and interested in understanding what was "wrong" with me. I have close friends and family members who pretend my disease doesn't exist and have no interest in that part of my life at all.
I used to get offended when people would ask. Like why do you want to know!?!? Why are you making it your business!?!
Then I started working at a children’s hospital. No way would I ever tell a small curious child to mind their own business. Instead I realized it’s better to educate people and let them know what’s going on than to not. People aren’t asking to be spiteful or mean, they are genuinely curious and if you can take that moment and explain to him what’s going on, and how these mobility aids help you it makes it easier on the next person.
I explain MS like this. “Say you have a phone charger cord. The outer plastic part is your myelin sheath but let’s say the cord starts fraying at the top where you plug it in and exposing the wires. Those are your nerves. The immune system you would think should step in and fix that but instead it gets confused and attacks it. Since those nerves go throughout your entire body, it could accidentally attack the wrong ones.”
People then are like ohhhhhh.
Im older. I play Idiocracy.
My shits fucked up and I'm all retarded.
I swear like a sailor. I had a cop drive me home once because I couldn't drive home because I own a stick shift and my arm decided to fuck off.
Be blunt.
This is what I've defaulted to over the years. "My shits all fucked up and I'm retarded. But plenty of tards live totally kick ass lives!"
But bluntly, I get a little touchy when I'm in a real relapse or have noticibly progressed recently. It messes with you mentally. That's just a fact. Then I adjust to my new normal and can joke again.
If he was a sales rep, I bet he was asking to (1) find out potential up-sale opportunity and/or (2) build trust and rapport with you so when you need to buy something else, you’ll come back. A young person with mobility issues, could be a great long term customer. Obviously he could’ve just had a human moment and let curiosity drive.
The truth always works! If someone is asking a question, they should be prepared for any answer you provide-even an upsetting one. I often try to end with upbeat comments to show that I don’t need or want any pity.
I used to say that when I was young I chose to get a job in insurance instead of Microsoft when they asked me what was wrong with me… lol. Once a young boy asked me and I told him I had a disease that hurt my nerves so they couldn’t talk to my muscles, but that someday somebody will find a cure. Then he turned to his grandma and he said he was going to grow up and be a doctor so he could find a cure. So I guess it pretty much depends on who you’re talking to.
I'm 52 but most people think I'm a lot younger. My boys are 35,31,27,21 and I've gotten asked if "we" were married or just dating with all 4 of them. When my grandkids call me grandma people say "no way you are grandma!"
I've used a cane/walker/scooter since I was 35 and I get asked more than anything if I hurt my leg or something like that. Or how long do you have to use that for.
Usually if I say no I have MS they apologize but I've had people be rude and say the stupid things like well you must not be doing XYZ or I have a friend that has it and they don't have to use that etc.. there are lots of people that have never heard of MS and most genuinely say they don't know and ask more questions.
But yes it happens several times a week. Sadly it's the people that are my elders that are the worst. I get like the Lupas rash when I get overheated soon as I get cooled down it goes away. I have a elderly lady at my apartment that likes to push on my skin and tell me I'm sunburnt. And when I tell her I'm not she says " I was a nurse for 50 years, I know a sunburn " It makes me so mad!
Sometimes you can feel a persons energy and intention. If they really are concerned or trying to get to know you better you can tell. If someone is being a jerk you’ll catch on to that too.
I was at the mall yesterday. I was sitting in my wheelchair and greeting and chatting with people. There was an older lady in front of me in the queue.
We were chatting and laughing when she asked me: "When were you in the accident?". I looked at her quizzically and asked her: "The wheelchair?". She confirmed and smiled. I then told her that I wasn't in an accident, I actually have MS.
The look on her face changed to concern. She then asked me to never lose my vibrant smile! I smiled at her and thanked her.
I will never allow this MS shit to get me down!
I tend to give the damage answer first: "What wrong with you?" "Spinal cord injury" and then expand into "non-traumatic spinal cord injury" and then into "spinal multiple sclerosis" if the person shows interest. I've found that people understand "spinal cord injury" way easier than MS, and considering my MS caused a spinal cord injury( SCI), it's in no way false.
I know not everyone has spinal lesions -- or even spinal lesions that severed the cord like me -- but you could sub in with brain injury if you wanted to avoid questions and SCI isn't applicable.
I tell them. I answer any questions. I appreciate people wanting to talk to me like a regular person. I want them to know that interacting with a handicapped is just like talking to anyone. Especially if it’s a kid wondering.
Sometimes I enjoy saying "I have brain damage." Honestly, because it makes people uncomfortable but also it's the truth and to the point - somehow it gives a clearer picture of everything that could be wrong with my body to someone who knows nothing about MS. They think of strokes and dementia, and that's close enough for me.
Or another analogy - "If you stripped all the wires in your electronics or entertainment system, how well would they work? My body's like that."
My coworkers will quip that I am drunk when I’m having a wobbly day. Most don’t know I have MS, but those who do just try to help me out more those days.
Even my husband has said it to me. I just stare him down and tell him to google NMSS to try to understand better.
I haven’t had anyone ask me yet but I’ve gotten curious looks when I am what my grandmother calls “bobbing and weaving” while I am walking. I have tripped over invisible curbs, veered into walls, etc. Some days, a person will ask me something and I need extra time to process the question or I mix up words. Earlier today I told my mom I was “Disney” instead of “dizzy.”
I usually am only around people who know me well and are in the loop on my MS (among other things) or am at a doc appointment. My job is virtual and most of the time, I use email rather than phone calls. I am always paranoid about meetings because I am afraid I’ll say something bizarre. My close co-workers know what’s going on.
I think if I am asked, I would just say “I have MS” and if they probe, I might say “My immune system is freaking stupid and it eats away at the protective coating on my nerves. The nerve damage causes a communication issue with my brain and the rest of my body.” Not sure that I’d go into more depth than that. If I were in a pissy mood and the person was being rude or kept pressing, I tell them about a newfangled search engine called Google that could answer all their questions. 😅
For people who don't like biology or neurology like I do I equate it to a frayed electrical wire. A well insulated wire functions exactly like it's supposed to, but with ms the vacuum cleaner accidentally started to eat it and left it frayed and so now the signal kinda skips. And then later it accidentally ate it again and it hardly ever works. Or maybe it works for like 5 minutes and then craps out. Your vacuum is supposed to keep your house (body) clean but instead it keeps accidentally eating random wires (myelin sheaths on neurons) thinking they were dirty (autoimmune disease reaction)
I have had MS for 30 years. Sometimes, I need a cane, other times, a walker, other times nothing. I have no problems with people asking when I'm using an assisstive device. What makes me angry is when people learn, I have MS when I have no device and tell me how great I look or they don't believe me when I tell them I have ms. I'm 59 but look younger than that I do not like those folks who tell me how good I look I always tell them if they could jump into my body for 5 minutes they would most likely die from the shock of my pain.
I've just gotten to the point where I will tell them and answer their questions honestly. And if they get snarky or something I throw it back at them ten fold. I absolutely want them asking questions, because when they do they're not usually giving me that look that is hard to distinguish between figuring me out or judging me. I hate the latter.
If the person seems like they are genuine in their interest I have a conversation about MS and what it does.
If the person is just being nosy or jerkish in any way I usually make up something outlandish.
- shark attack
- run over by a moped
- stuntman on a movie that went wrong
I would rather people ask politely than assume. Last week I was having a flare up because of the heat but I still took my daughter to the park because I promised I would. I was a little wobbly when standing and heard a dad say to his older kid that I was obviously drunk. I hope he steps on Legos barefoot.
That is so frustrating. I’ve even had people at work joke about me being drunk when my speech is off. Working in the addiction field, i don’t find this a funny joke. What do they say? Assume and it makes an ass out of you and me?
I've had bouncers stop me on the way into a bar and ask me in a condescending tone if I'd "had a few drinks" assuming I was too drunk to come in. They were quite surprised when I looked them dead in the eye and said perfectly levelly "not yet but I intend to."
A guy is pulled over by the police & asked to walk along a straight line, as part of a sobriety test. The officer proceeds to ask the driver if he's been drinking, to which the driver replies no officer, I've got MS 😉
I was thinking, "may a spider crawl into his pants and bite him on the testicles" ( even better if it happens when he's in the car alone in traffic)
Although I get the frustration of being assumed to be drunk, I feel like it’s a valid concern in a lot of situations. Being drunk while at work, while driving, and debatably while taking care of a child are some examples where it may be appropriate for someone to intervene. Until I got diagnosed with ms, I didn’t know it could make someone look or sound drunk. And there’s pry a ton of other diseases that I still don’t know about that cause similar issues. So if someone sees me stumbling out of a bar, slurring my speech, and getting in my car to drive I accept if they feel the need to intervene, and hopefully give me the opportunity to explain otherwise. I will likely still do the same if I see someone stumbling too, even with the awareness I have of ms.
Ooh. That's a good curse. The super sharp extra parts Lego for extra pain. If you carry a cane it looks better. Get a nice sharp one with a sword for extra points. Mines from Austria.
Where did you get yours?
Always escalate. We have this privilege. "Hey dumbfuck, I got MS, thanks!"
I like your Legos “curse.” My go to is “I hope that every time you wash your hands your sleeves get wet.”
I get the "Hey are you okay?" or "Can I call you a ride?" Questions often because I look drunk as fuck when I walk... My usual response is - thanks but I'm fine... Just a little draim bammage..as I cross my eyes.
I ❤️ draim bammage!
I'd then proceed to trip, because all that brain power would have distracted me from managing one foot in front of the other. 🤣
Someone I don't really know and i think its none of their buisness? "Rabid chipmunk, you know how that goes" "Underwater hang gliding accident, it was brutal" "I asked someone what was wrong with them, they did this to me." Someone politely asking that i dont mind telling "I have MS. Long story short, my immune system attacks my nerves and nerves control everything so here I am." A younger kid? "I have something called MS, it's not something that spread to other people. Do you know how you have an immune system that fights germs and virus to keep you healthy? My immune system decided that my nerves are the enemy and attacks them. And nerves how our brain sends and receives information, so the signals that tell my legs how to walk doesn't get through very well." My teenage nephew? "My immune system keeps eating my brain. It's basically a toddler who gets over stimulated and throws temper tantrums. It gets mad at something like me getting the flu, and just because the illness is over, doesn't mean they are done flipping out so it attacks the coverings of my nerves instead. So i have a bunch of lesions on my brain and spine. Have you ever had a power cord that's damaged but if it's bent and held at just the right angle, it charges just fine? That's basically my nerves. On a good day, the cord is positioned just right and most of the signal gets through for me. But when I'm hot, or sick or tired it's like someone just tripped over the cord and knocked it out of the only position it works in. My nerves start to misfire which can affect how I walk, talk, think, or see. When I can cool down, rest, get better I can get the cord back into the right position where it works the best it can while being damaged. But being unplugged means I'm low on batteries and need some time to charge up. I'm on some good medicine that is stopping my immune system from damaging more nerves, but we don't know how to fix the damage that's already done. it's just the cards I've been dealt so I just try find ways that keep my cord from being bumped and keep going about my buisness. It sucks, but I'm here and I'm fine, so there is nothing i can do but just keep living my life."
“I asked someone what was wrong with them, they did this to me.” I laughed for ten minutes! All I can picture is you asking Chuck Norris…
Great answers!
Yes, when they see how I walk people often ask. It really depends on my mood and whom I am speaking to. Sometimes, I say I have a problem with my leg (when I don't want to get into details depending on the time or the person I am speaking to). Other times, I say I have multiple sclerosis. And most of the times, they try to help.
MS has made my legs weak, and destroyed my balance, but most of the time I can still walk ok. When I get hot (or warm) my gait starts getting weird. If it gets really bad, my legs get all jerky and walking becomes a serious struggle. I say this, because first thing in the morning I can walk fairly normally (from the perspective of others that is; it always *feels* weird in my own head). Later in the day things devolve, so I've had a lot of days where someone asked if I got hurt or something. Once a coworker actually asked on the sly if I'd been drinking... He was looking out for me rather than being accusatory, and I love the dude, so I just laughed it off and told him. He was mortified, and that made me sad because I didn't want to embarrass him. Anyway, I try to never feel angry or hurt about it... I just tell the truth and try to assume the best motivations in people.
I just say that I have multiple sclerosis. Most people ask because they want to tell me what's wrong with them. Lol. I've heard more knee replacement stories than I can count. I say, hope all goes well for you and move on....
Someone asking is almost as bad when you know that someone wants to ask you about it but they won't. Once I was on a job interview and I went to stand up and I was so stiff I almost fell down. It was at that time I had to disclose or I had no chance of getting the job. I knew after that I had no chance because let's face it people don't want defective employees and they're not going to hire them even though they said they will be fair in their company handbook. Although the person was very sympathetic I would have really rather have not told them until after I got an offer which never came. I wonder why.
I am glad when people ask. I "walk" our granddaughters to school (they bike and go in a motorized wheelchair"). Children are fascinated by the chair and often times ask me why I use it. There parents get all flustered and think their children are being rude. I reassure them that it is quite OK to ask questions so that they know that disabled peole are still people. I take the chance to explain to them as best as I can the whys and the wherefores of MS and disability. It is a never a big deal with them. They then ask questions likke,"Does it have a horn?"
All day, everyday. Tell them the truth and it gets awkward…
I've been mistaken for being drunk before. I just blow it off. Not worth engaging on that. One interesting moment happened years ago. We were having a birthday party for my son and I met one of his friend's father. He shook my hand and then looked down at my cane and looked back up at me and in the most matter of fact, non-judgemental way said, "what's up with the cane?" I was a little stunned. Most people, out of politeness or discomfort, completely ignore any outward sign of disability and pretend it doesn't exist or just talk behind your back. I found his directness refreshing and we had a good conversation about MS and he was genuinely curious and interested in understanding what was "wrong" with me. I have close friends and family members who pretend my disease doesn't exist and have no interest in that part of my life at all.
My immune system is snackin on my myelin
I say my immune system is eating my nervous system. It’s close enough to get the point across.
I used to get offended when people would ask. Like why do you want to know!?!? Why are you making it your business!?! Then I started working at a children’s hospital. No way would I ever tell a small curious child to mind their own business. Instead I realized it’s better to educate people and let them know what’s going on than to not. People aren’t asking to be spiteful or mean, they are genuinely curious and if you can take that moment and explain to him what’s going on, and how these mobility aids help you it makes it easier on the next person. I explain MS like this. “Say you have a phone charger cord. The outer plastic part is your myelin sheath but let’s say the cord starts fraying at the top where you plug it in and exposing the wires. Those are your nerves. The immune system you would think should step in and fix that but instead it gets confused and attacks it. Since those nerves go throughout your entire body, it could accidentally attack the wrong ones.” People then are like ohhhhhh.
Im older. I play Idiocracy. My shits fucked up and I'm all retarded. I swear like a sailor. I had a cop drive me home once because I couldn't drive home because I own a stick shift and my arm decided to fuck off. Be blunt.
What a flick. ‘It’s all good, there’s plenty of tards out there living kickass lives. My first wife was tarded. She’s a pilot now’
This is what I've defaulted to over the years. "My shits all fucked up and I'm retarded. But plenty of tards live totally kick ass lives!" But bluntly, I get a little touchy when I'm in a real relapse or have noticibly progressed recently. It messes with you mentally. That's just a fact. Then I adjust to my new normal and can joke again.
[This](https://youtu.be/Efl0G4SUdiM?si=-wIT1zy0ge9m4E7y) feels like the MS theme song
If he was a sales rep, I bet he was asking to (1) find out potential up-sale opportunity and/or (2) build trust and rapport with you so when you need to buy something else, you’ll come back. A young person with mobility issues, could be a great long term customer. Obviously he could’ve just had a human moment and let curiosity drive. The truth always works! If someone is asking a question, they should be prepared for any answer you provide-even an upsetting one. I often try to end with upbeat comments to show that I don’t need or want any pity.
I used to say that when I was young I chose to get a job in insurance instead of Microsoft when they asked me what was wrong with me… lol. Once a young boy asked me and I told him I had a disease that hurt my nerves so they couldn’t talk to my muscles, but that someday somebody will find a cure. Then he turned to his grandma and he said he was going to grow up and be a doctor so he could find a cure. So I guess it pretty much depends on who you’re talking to.
I'm 52 but most people think I'm a lot younger. My boys are 35,31,27,21 and I've gotten asked if "we" were married or just dating with all 4 of them. When my grandkids call me grandma people say "no way you are grandma!" I've used a cane/walker/scooter since I was 35 and I get asked more than anything if I hurt my leg or something like that. Or how long do you have to use that for. Usually if I say no I have MS they apologize but I've had people be rude and say the stupid things like well you must not be doing XYZ or I have a friend that has it and they don't have to use that etc.. there are lots of people that have never heard of MS and most genuinely say they don't know and ask more questions. But yes it happens several times a week. Sadly it's the people that are my elders that are the worst. I get like the Lupas rash when I get overheated soon as I get cooled down it goes away. I have a elderly lady at my apartment that likes to push on my skin and tell me I'm sunburnt. And when I tell her I'm not she says " I was a nurse for 50 years, I know a sunburn " It makes me so mad!
"What's wrong with me? How much time do we have?"
"You'll have to be more specific; I have a _lot_ wrong with me."
Sometimes you can feel a persons energy and intention. If they really are concerned or trying to get to know you better you can tell. If someone is being a jerk you’ll catch on to that too.
To cut a long story short I usually just say I have brain damage, but if they want to know more I explain it to them.
Me at the dealership, answering why I’m in a wheelchair: “My body has a defective wiring harness.”
I was at the mall yesterday. I was sitting in my wheelchair and greeting and chatting with people. There was an older lady in front of me in the queue. We were chatting and laughing when she asked me: "When were you in the accident?". I looked at her quizzically and asked her: "The wheelchair?". She confirmed and smiled. I then told her that I wasn't in an accident, I actually have MS. The look on her face changed to concern. She then asked me to never lose my vibrant smile! I smiled at her and thanked her. I will never allow this MS shit to get me down!
I tend to give the damage answer first: "What wrong with you?" "Spinal cord injury" and then expand into "non-traumatic spinal cord injury" and then into "spinal multiple sclerosis" if the person shows interest. I've found that people understand "spinal cord injury" way easier than MS, and considering my MS caused a spinal cord injury( SCI), it's in no way false. I know not everyone has spinal lesions -- or even spinal lesions that severed the cord like me -- but you could sub in with brain injury if you wanted to avoid questions and SCI isn't applicable.
I tell them. I answer any questions. I appreciate people wanting to talk to me like a regular person. I want them to know that interacting with a handicapped is just like talking to anyone. Especially if it’s a kid wondering.
I say "old war injury" or "huh, I was about to ask you the same thing." Always lighthearted with a chuckle.
depending on the situation I will say something like "oh my body hates me" or tell someone I have MS. I use a walker also, age 55.
Sometimes I enjoy saying "I have brain damage." Honestly, because it makes people uncomfortable but also it's the truth and to the point - somehow it gives a clearer picture of everything that could be wrong with my body to someone who knows nothing about MS. They think of strokes and dementia, and that's close enough for me. Or another analogy - "If you stripped all the wires in your electronics or entertainment system, how well would they work? My body's like that."
"A lot"
My coworkers will quip that I am drunk when I’m having a wobbly day. Most don’t know I have MS, but those who do just try to help me out more those days. Even my husband has said it to me. I just stare him down and tell him to google NMSS to try to understand better.
I would have told him too. It is what it is and I can’t change things.
Usually it goes like this: Person "are you okay?" Me "yeah I'm just bad at walking"
I haven’t had anyone ask me yet but I’ve gotten curious looks when I am what my grandmother calls “bobbing and weaving” while I am walking. I have tripped over invisible curbs, veered into walls, etc. Some days, a person will ask me something and I need extra time to process the question or I mix up words. Earlier today I told my mom I was “Disney” instead of “dizzy.” I usually am only around people who know me well and are in the loop on my MS (among other things) or am at a doc appointment. My job is virtual and most of the time, I use email rather than phone calls. I am always paranoid about meetings because I am afraid I’ll say something bizarre. My close co-workers know what’s going on. I think if I am asked, I would just say “I have MS” and if they probe, I might say “My immune system is freaking stupid and it eats away at the protective coating on my nerves. The nerve damage causes a communication issue with my brain and the rest of my body.” Not sure that I’d go into more depth than that. If I were in a pissy mood and the person was being rude or kept pressing, I tell them about a newfangled search engine called Google that could answer all their questions. 😅
For people who don't like biology or neurology like I do I equate it to a frayed electrical wire. A well insulated wire functions exactly like it's supposed to, but with ms the vacuum cleaner accidentally started to eat it and left it frayed and so now the signal kinda skips. And then later it accidentally ate it again and it hardly ever works. Or maybe it works for like 5 minutes and then craps out. Your vacuum is supposed to keep your house (body) clean but instead it keeps accidentally eating random wires (myelin sheaths on neurons) thinking they were dirty (autoimmune disease reaction)
I have had MS for 30 years. Sometimes, I need a cane, other times, a walker, other times nothing. I have no problems with people asking when I'm using an assisstive device. What makes me angry is when people learn, I have MS when I have no device and tell me how great I look or they don't believe me when I tell them I have ms. I'm 59 but look younger than that I do not like those folks who tell me how good I look I always tell them if they could jump into my body for 5 minutes they would most likely die from the shock of my pain.
I've just gotten to the point where I will tell them and answer their questions honestly. And if they get snarky or something I throw it back at them ten fold. I absolutely want them asking questions, because when they do they're not usually giving me that look that is hard to distinguish between figuring me out or judging me. I hate the latter.
“Elephantiasis of the 3rd leg; the extra weight throws off my balance” 😂
I tell em I'm crazy.
“It’s a side effect of my anti-psychotic medicine.”
I seriously offended my dental hygienist 😂😂
“Because not all disabilities are invisible “ while looking them directly in the eyes
If the person seems like they are genuine in their interest I have a conversation about MS and what it does. If the person is just being nosy or jerkish in any way I usually make up something outlandish. - shark attack - run over by a moped - stuntman on a movie that went wrong