u/LadybugLamp

I'm a young adult with disabilities (not on disability benefits) who's never had someone close to me who is. I don't really understand what the process and limitations are like and it makes me feel like I'm missing something big. I understand that there's income and bank account limitations. But in big cities where monthly rent is usually around or over $2,000, or if someone needs a new wheelchair (which are still often $2,000+ used) how does someone on benefits pay for things, if they're not allowed to have more than $2,000 in the bank? Am am I misunderstanding?

TLDR; don't have a cfs specialist or primary care, need to get documentation of my capacity to submit to school as medical need to take a step back after functioning lowered.

Hi all! I am a grad student with me/cfs, fibromyalgia, pots, (and all the other fun comorbidities that tend to tag along) I've had a ton of reductions in my functioning level in the last five years since I entered university but especially in the last 7 months.

In October, an issue with my stomach flared up a lot and I entered a push crash cycle trying to work through it. I was way over my capacity, and I was never properly recovering out of those crashes. I had to drop classes after not being able to manage them during the near constant crashes. It really lowered my functioning in a pretty scary way, and now I need to submit documentation that I had a medical need in taking a step back.

I unfortunately don't have a CFS specialist. I was diagnosed when I was 17 at a children's hospital, and after diagnosis, there wasn't really much treatment available for me to feel like it was worth finding a specialist for, and Long Covid hadn't increased awareness about the condition yet. I also don't have a primary care doctor because my insurance lets me book directly with specialists. It was always a huge bonus that I could split my doctor's appointments in half and go directly to a specialist when getting treatment, but now that I need documentation it's definitely kicking me in the ass, because there's not a continuous record through a primary care.

What specialist could I schedule with to do a functional capacity assessment or general assessment of what I'm able to do? I basically just need someone knowledgeable on ME that could testify that in this severity of crash I had a medical need to step back from full time work and full time school? I tried to see a primary care doctor to discuss doing that assessment or seeing if she could refer me out, but she wasn't aware of me/cfs and just asked me what doctor to refer me out to.

(Honestly, in retrospect I can't believe how much I was even trying to do-- It seems pretty obvious that someone with me/cfs really should not be trying to have a full time in person teaching practicum, with mandatory prep at home, and another part time job to pay for housing, and a 12 credit grad student schedule, and just sacrifice all the daily living tasks like hygiene and home maintenance and a social life so I could work around the clock. I was surrounded by people who were pulling it off, so I felt like such a failure not able to keep up-- but now I realize that's a crazy amount of things on anyone's plate, much less someone who already had mild to moderate me/cfs. It's been a hell of a year...)