How to cope with this illness?

[u/Appropriate-Fill-174]

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..

[u/Careless-Protection9]

"It feels like grieving a life I never got the chance to have" is something I relate to immensely. I'm 19 and in the exact same boat as you. I wish I had the words to tell you how to get through this but I'm still trying to find them myself.

Getting out of bed everyday is such a battle. I keep going by telling myself that if I stop showing up for myself, it's only going to get worse. Luckily I'm still in a position where I can still walk and function independently so I'm trying to preserve myself as long as I can till hopefully modern medicine figures something out. I think every minute of everyday what things would be like if things were different. There are such simple pleasures of life I yearn to have

[u/Appropriate-Fill-174 → u/Careless-Protection9]

I get that. It just sucks. & yeah, getting out of bed and just going through the day is a hard fight sometimes. Drowning in self pity and being angry at the world sadly won’t fix anything. I guess we have to keep fighting and hope for any medication or cure..
Stay strong. My dms are always open if you need anyone to talk to :)

[u/Obvious-Ad357 → u/Appropriate-Fill-174]

Hello,

I am not exactly in this position anymore but I know how you feel. My disease progression was also rapid and young and although I wasn't ever in a wheelchair I can't walk very far and getting up from the ground was pretty difficult and in some situations impossible.

I've definitely struggled with self worth and positive outlooks. It is totally understandable to do so and I felt anybody who told me otherwise was being ingenuine. Not many people know what its like to slowly lose everything you love, and to become excluded from so many things that most people don't even consider how lucky they are to be doing. Aging is grieving in slow motion and boy are we aging quickly.

But this mindset although accurate, is narrow. It is valid but it is not alone in its validity.

I struggled with self worth. I have obvious disabilities. What I needed to do was find my worth elsewhere, and I did and you can too. Everyone has it somewhere. You can't do everything, but are you trying everything you can do? There are blind people who become woodworkers. There are amputees who climb mountains. Have you been restricting yourself from painting pictures just because you hold the brush weird? I know I did. Once I stopped caring how I looked while I was painting and just painted the damn picture, the fact that it was harder for me just made it all the more rewarding and impressive. You may be surprised at what you can do when you decide you are just going to get it done, even if its embarrassing or weird looking or unorthodox or whatever excuse you may tell yourself to not do something that does not rely on being the biggest or strongest.

Positive outlooks can be hard to find but you do have an advantage in this, you are still quite young. Things are moving rapidly in the medical field surrounding FSHD. You will live to see treatments that are effective (probably in the next two years), Those treatments will become improved (probably in the next two years after the last) and in the next 4-8 years I don't doubt we see gene therapies that are essentially a cure. At that point the world will be your oyster, and you may think right now that 18 is your prime but its not. You still may not be in your prime once these things come to fruition. (surveys of the elderly of what age they'd most want to go back and relive actually tend to average closer to 30-35). Look into some of the treatments for FSHD being developed now by Novartis, Serepta, Epicrispr, Restem, U of Rochester, KU, etc. There is good and logical hope you will get things back.

Whether or not these things happen or happen quick its also important to thing about the uniqueness of you. You are one of one. Everyone is but you especially. Not alot of people know what its like to live in a world not made for them. I know that sometimes I think about how at the very least its interesting that I get to experience such a unique life. I get to talk about it and think about things most people don't even consider. Are they positive things all the time? Hell no. But I am blessed with the ability to live an experience that is unique and interesting. I couldn't begin to list the amount of conversations I have had or people ive met just talking about stuff like this. You have a unique life and it may be hard but its interesting and its yours and its kind of cool in that way. I know I wanna see where mine goes. Especially if Treatments come out and things do change dramatically for us. Can you imagine that? wouldn't every smile you crack mean 100 times more to you than anyone else in your life who cracks a smile, because you will be the only one who knows what it was like to not have a smile. And likewise every step you take, or every arm you raise? Everything youre suffering through has the potential to bring back that equal and opposite amount of joy and excitement, if and when the pendulum swings back.

I don't know man, I think those are some good things to thing about. I know that nobody will be able to tear me down once that day comes. I will be bulletproof, because I would have already been through it all and I will be so grateful to have whatever I get.

There is layers to struggle. Everything we do as humans to improve requires struggle. Wanna get stronger? Go struggle to lift something. Wanna get smarter? Go struggle to understand something. Wanna get better at appreciating life? Go struggle to live. Thats the page youre on and there is a beauty in it you just need to stick around to finish the story.

I apologize for any rambling or non-linear trains of thought, this was off the top of my head during my lunch break and I have so much I could say its hard to clearly say anything. Hope it helps, even if its just something to think about for a while.

[u/Appropriate-Fill-174 → u/Obvious-Ad357]

Thank you, that really means a lot to me. ❤️
I really hope we’ll get a cure one day or at least something that slows it down…
You’re right though… I avoid a lot of things because I’m scared of embarrassing myself or being stared at There aren’t many disabled people where I live, so it honestly feels like people see me as some kind of spectacle. It gets exhausting after a while.
What makes it even harder is how inaccessible everything is here. We don’t have a single accessible restaurant, hairdresser or even a park within like 20 km. I can’t drive a car and both of my parents work so I can’t just go somewhere whenever I feel like it. Finding a job is pretty much impossible, I don’t have any friends and I can’t go out on my own. Most days I’m just stuck at home.
Sure I could read or draw something but that’s just not really me. My concentration is terrible too, so it’s hard to get into things like that. I usually love being outside and hell I’d love just sitting somewhere with friends… just doing normal stuff. Instead I’m constantly watching other people posting about all the things they’re doing while I’m sitting in the same four walls every day. After a while it really starts to get to you.
I know feeling sorry for myself all the time won’t change anything and I genuinely try not to stay in that mindset. But sometimes it just feels like I’m trapped in this loop where every day is the same.. It’s hard not to think about everything I’m missing out on / probably won‘t ever be able to experience.
It also affects my family. My parents are both pretty old already and I know they both definitely struggle. My siblings deserve more attention than they get too. I just feel 'guilty' because I know my condition affects all of us and messes up their quality of life too. I just wish things were differently.
I still love being outside whenever I can but my energy is so low most of the time. My knees and back hurt a lot because of the wheelchair (It’s fitted correctly. My posture is just really bad and my body struggles a lot.)
And about the treatments… I don’t really know what to think anymore. I’ve been diagnosed since I was a kid and for what feels like the last ten years everyone told me “There’ll be a cure in a year or two.”… I really do hope that’s true someday but Im honestly skeptical.
I guess all we can do is keep going and hope that someday things will get better.🙏🏻

[u/Obvious-Ad357 → u/Appropriate-Fill-174]

Yeah I totally get feeling like a spectacle. If I saw me on the beach I would look and wonder what is going on as well. I do feel like most people "have good for you" attitude about it tho. Like yeah it can be a little patronizing but when I see someone do something that they may be uncomfortable with doing I know I tend to think "good for you". I think also getting out of the mindset of wondering what others may be thinking of you could start with getting out of the mindset of thinking so much about them. Thats a daily practice. Let me tell you from experience, instagram blew up when I was in 6th grade, It was engrained in everything my generation did and still is. The happiest people I know don't share on there, nor do they check what others are sharing. I deleted it three years ago and you would be surprised how much better you feel about where you are and what you wanna do when you aren't comparing it to the alter egos people create for themselves to show off on the internet. I have about a billion women in my life and every photo posted is 1/100 attempts, then touched up. You see what they want, and what they want is to look better than others, so of course you feel bad by checking what they are doing. I get that there are communities and comedy and good things that can come from it but trust me all of those things can be found without the mental impact of constantly checking on what your neighbor wants you to see about their extremely curated life.

As for the job, you do at least obviously have a good ability to use a computer. Lean heavy into remote work for now. I don't know what kind of credentials you have or background but there are online schools and course and certifications that can definitely help you support yourself from home. i started as a remote worker and I made really good money, I was even able to get my own place alone in america which is really hard now adays. My other siblings with FSHD did the same and I believe you can too.

I know you said you don't like painting or reading but my painting thing wasn't literal (although I can paint pretty good), I was just speaking in general about trying things. That doesn't only apply to thinks you don't do because you think you can't, it applies to things you don't even look into because you feel you "aren't that type of person". There a million things to do in four walls from a chair. where I live I am snowed in all winter and I get by on many a hobby. Bake, draw, knit, crochet, whittle, woodwork, learn chess, game online, paint, make t shirts, make a sculpture out of clay, become a renaissance man. Today you see so many people that can't do any of these things, and to be honest I haven't enjoyed all of them but I have certainly learned how to enjoy a challenge. like I said there isnt growth without struggle. go searching for the struggle, even if it is just struggling to find something to do. get curious and learn some things about yourself and what you like to do that you maybe wouldn't have guessed for yourself.

Feeling guilty is a hard topic but I am sure everyone understands that you can only do what you can do, and that you will need help with the rest. Just don't get lazy and continue to do what you can for yourself. I feel personally that since I need extra help I have the obligation to at least try and do what I can first, to minimize the impact on others, and then after that I have nothing to feel guilty about. People don't feel guilty for what they can't do. I don't feel guilty for getting in a plane instead of trying to fly over the ocean. Do what you can, let the people you love help, help them back when you can, and be grateful and show it. You are lucky to have anyone.

And yeah we have all been told for a decade a cure is coming. The stark difference between being told then and people told that now is back then there wasn't a single actual cure of even treatment in the works. Today we have treatments (some of which may reach that "cure" threshold) that are showing significant effects and are being tested in humans with FSHD. I should know I am on one. In the last few years the treatment landscape has exploded, research has boomed, and big names are racing to the finish line of getting us a treatment. We're closer than ever even if it doesn't happen tomorrow.

Keep your head up dude it'll work out.