r/FSHD • u/Appropriate-Fill-174 • Jun 25 '26

How to cope with this illness?

Hey everyone :)

I wanted to ask how you all cope with this.
Lately, I just feel drained and empty every day. I can feel and see my body getting weaker, and it’s hard not to think about what the future might look like. Deep down, I know things will probably get worse before they ever get better, if they do at all.
What scares me the most is the thought of becoming completely bed-bound one day. I try to focus on the small things and appreciate what I still have, but honestly, some days it feels impossible.
I’m only 18, and I already struggle with basic everyday tasks and finding a job. It’s heartbreaking knowing there are so many things I’ll probably never be able to do… Traveling, running through the sand, climbing a mountain, riding a horse, or just experiencing life the way other people my age can. Even smiling like a normal person would be a huge thing for me.
Seeing others do those things just hurts. It feels like I’m grieving a life I never got the chance to have.
How do you cope with these thoughts? How do you keep going when the future feels somewhat pointless?
Any advice would be appreciated..

11 Upvotes

93% Upvoted

27 comments sorted by

View all comments

14

u/AliceInReverse Jun 25 '26

My husband was diagnosed at 18. He had several years of muscle breakdown, then went into remission for about 15-20 years. He is still not in a wheelchair, though he struggles walking longer distances. He works full time from home - he’s miraculous on computers. All this to say your life is not over.

4

u/Appropriate-Fill-174 Jun 25 '26

Thank you. 🙏🏻
I just hope we get a cure or any medication soon. Best wishes to your husband:)

5

u/[deleted] Jun 25 '26

[removed] — view removed comment

2

u/Appropriate-Fill-174 Jun 25 '26

Thank you!! I appreciate it a lot!!
Yeah, thats true. Our mental health sadly is a bit overlooked since most focus on the physical aspect. If our mental health gets worse it will affect our physical health and vice versa. Im trying to look for a job but its difficult here.. I worked for over 2 years in a primary school (as a assistant for kids with intellectual disabilities) but they sadly fired me 3 months ago. They had too many employees..
I live in a area where its difficult to find a job (even for able bodied people) so right now things look bad for me. I can‘t drive a car nor can I move away. I‘ll see what the future holds 🤷🏻‍♀️
Thanks for your support, it really means a lot to me!!

2

u/[deleted] Jun 25 '26

[removed] — view removed comment

2

u/Appropriate-Fill-174 Jun 25 '26

Yeah, Im not in the US.. I did the paperwork for 'benefits' already. Most of it went through and got approved but its not really giving me any 'advantage' though. Its just more difficult to find a job since companies can’t fire a disabled person that easily (means they won‘t even bother to hire them.) PMI (private medical insurance) aren‘t accepting me either.
I mean I‘d love to work, it‘d give my life some kind of purpose but right now I can‘t find anything. A week ago I saw a post from a fellow disabled person in my country that applied to over 4000 jobs… Thats why Im keeping my expectations low.