30 with MS, no family support, trying to figure out work/disability/life from scratch
Hey everyone,
I’m writing this because I’m 30 years old and I have relapsing-remitting MS. I’m posting because I feel like I’m at a point where I’m having to start my whole life over, and honestly, I’m lost.
The hardest part isn’t just the MS itself. It’s the fatigue, the pain, the brain fog, the uncertainty, and trying to figure out how I’m supposed to survive financially while my body doesn’t cooperate the way it used to. I’m trying not to use MS as an excuse, but some days it genuinely hurts to move and the fatigue makes even basic things feel impossible. I just had to fight with my neurologist for a prescription for armodafinil.
I don’t really have family support, so I feel like I’m trying to navigate all of this alone. I don’t have savings anymore, and I’m trying to figure out how to re-enter the workforce in a way that I can actually sustain. I’ve asked my neurologist for a referral to vocational rehabilitation, because I do want to work if I can. I just don’t know what kind of work makes sense anymore or how to rebuild without crashing.
I’m also dealing with what may be disability discrimination from a previous job, and I have an interview coming up with the EEOC. I don’t know if I should also talk to an employment attorney, or if I should wait and see what happens with the EEOC process.
I guess I’m asking for advice from people who have been through this part of MS life:
How did you rebuild after diagnosis or after losing your job?
Did vocational rehab actually help you?
How did you figure out whether to keep trying to work, apply for SSDI, or do both?
Did anyone talk to an attorney about workplace discrimination or accommodations?
What kind of jobs have worked for you with MS fatigue?
I’m not looking for pity. I’m just tired, scared, and trying to make the next right move. I want to have a future. I want to work if I can. I want to take care of myself and my dogs. I just don’t know what the path is supposed to look like right now.
Any advice, experience, or even just “I’ve been there and this is how I survived” would mean a lot. Some days I feel like I’m grieving the version of myself I thought I was going to be. I’m trying to believe there’s still a life for me on the other side of this, but right now I feel like I’m standing in the middle of the wreckage trying to figure out what to pick up first.
Thank you.