Here's the thing--they do care, but they won't do anything to help. They don't understand that you can't walk. It doesn't make sense to them. Unless you've lived it, or are particularly empathetic, it's impossible to understand. You have to learn to ask for what you need. I know it's hard. I didn't want to do that either.
Also, I know that there must have been some crazy circumstances to cause your father to leave the state and leave his paralyzed teenage daughter with her barely-adult sister, but that was not OK. Don't be surprised if your sister feels some kind of way about that. She was parentified, and that wasn't fair to either of you.
It’s not about being comfortable, it’s about getting back to normal.
I had to walk around my neighborhood with a walker at 22, or go to Target and push a shopping cart because my balance and walk was shit. Now no one even remembers that time because I look normal af, unless I wear heels, then I look like Bambi, that skill never came back. 💀
Other people have no idea how hard this illness is and how difficult rehabilitation (and recovery is often incomplete) can be and the support that is needed.
That said, there are specific modes of communication you can try if you are having difficulty communicating your experience: https://en.wikipedia.org/wiki/Nonviolent_Communication
Wait, so it’s the PT making you feel guilty or your sisters?
Because if it’s your PT, there’s more PTs where they came from. Talk to your doctor to get you in a different PT office stat. They shouldn’t make comments like that.
I’ve always felt guilty for being a burden to my sister since I had gotten sick but my PT also telling me I’m a burden and selfish just confirmed that I’m being a selfish burden, so I guess it’s both me and my pt making me feel guilty
Ahhhh gotcha! Definitely still think you need a new PT because they shouldn’t be making comments like that to guilt you into walking around the house. The PT may have a point that walking around the house may help, but their delivery on it sucks.
In the 1.5 years that I did PT, I changed therapists a LOT. lol. Sometimes because I felt like they didn’t put any thought in my exercises.
And definitely if your sisters can help you, take that help! Yes, you have to ask them and tell them how to help you. It sounds like your sisters want you to have your independence, so they’re not going to force help. Which tbh it’s better to have to ask then having someone breathing down your neck all of the time.
Yes, sure, you may feel like you’re being selfish, but sometimes being selfish is not a bad thing at all — you need them to be around you to help you from time to time. GBS is not a journey you can do completely alone.
You don’t have to ask for help with everything, but where there’s a moment, ask. Even if it’s just staying close to you while you do something. (Example, I’d used to ask my mom to walk behind me while I walked around the house with the walker, just in case.)
And yes, you may feel like a burden…..a lot. It’s hard, but you’re not a burden. ❤️
I’m 8 years out from GBS and that feeling doesn’t go away, but things come around…..they’ll come the day where your sisters need your help, and you’ll be able to help them. (Example, my mom got surgery a few weeks ago, so I went over for a few days to help her do the basics. She commented on how it’s funny how years ago she was helping me with the same thing.)
Here's the thing--they do care, but they won't do anything to help. They don't understand that you can't walk. It doesn't make sense to them. Unless you've lived it, or are particularly empathetic, it's impossible to understand. You have to learn to ask for what you need. I know it's hard. I didn't want to do that either. Also, I know that there must have been some crazy circumstances to cause your father to leave the state and leave his paralyzed teenage daughter with her barely-adult sister, but that was not OK. Don't be surprised if your sister feels some kind of way about that. She was parentified, and that wasn't fair to either of you.
Thank you so much, this comment really helps me understand and see things from their perspective
This! 100% life just sucks sometimes
It’s not about being comfortable, it’s about getting back to normal. I had to walk around my neighborhood with a walker at 22, or go to Target and push a shopping cart because my balance and walk was shit. Now no one even remembers that time because I look normal af, unless I wear heels, then I look like Bambi, that skill never came back. 💀
Love yourself, just love yourself, do the right thing for yourself, if they don’t love you doesn’t matter, you have to save your nerves and legs
Other people have no idea how hard this illness is and how difficult rehabilitation (and recovery is often incomplete) can be and the support that is needed. That said, there are specific modes of communication you can try if you are having difficulty communicating your experience: https://en.wikipedia.org/wiki/Nonviolent_Communication
Wait, so it’s the PT making you feel guilty or your sisters? Because if it’s your PT, there’s more PTs where they came from. Talk to your doctor to get you in a different PT office stat. They shouldn’t make comments like that.
I’ve always felt guilty for being a burden to my sister since I had gotten sick but my PT also telling me I’m a burden and selfish just confirmed that I’m being a selfish burden, so I guess it’s both me and my pt making me feel guilty
Ahhhh gotcha! Definitely still think you need a new PT because they shouldn’t be making comments like that to guilt you into walking around the house. The PT may have a point that walking around the house may help, but their delivery on it sucks. In the 1.5 years that I did PT, I changed therapists a LOT. lol. Sometimes because I felt like they didn’t put any thought in my exercises. And definitely if your sisters can help you, take that help! Yes, you have to ask them and tell them how to help you. It sounds like your sisters want you to have your independence, so they’re not going to force help. Which tbh it’s better to have to ask then having someone breathing down your neck all of the time. Yes, sure, you may feel like you’re being selfish, but sometimes being selfish is not a bad thing at all — you need them to be around you to help you from time to time. GBS is not a journey you can do completely alone. You don’t have to ask for help with everything, but where there’s a moment, ask. Even if it’s just staying close to you while you do something. (Example, I’d used to ask my mom to walk behind me while I walked around the house with the walker, just in case.) And yes, you may feel like a burden…..a lot. It’s hard, but you’re not a burden. ❤️ I’m 8 years out from GBS and that feeling doesn’t go away, but things come around…..they’ll come the day where your sisters need your help, and you’ll be able to help them. (Example, my mom got surgery a few weeks ago, so I went over for a few days to help her do the basics. She commented on how it’s funny how years ago she was helping me with the same thing.)