I have a kid with serious chronic illnesses and we have “been there.” They missed a lot of school for health reasons, including surgeries, and the guidance counselor wrote about that to provide context. They also took some online classes for greater flexibility, which the high school accepted. My kid wrote a few lines in the additional info session about being diagnosed at age 4 and folding clothes in the hospital, hoping that being a “good kid” would mean the disease would go away. That’s all they wrote about health- nothing in the essays at all. I seem to remember that I also wrote a short note to go with the guidance counselor note explaining that despite the absences, treatments had been effective and we did not expect that pattern to continue.
There is no reason not to disclose- I mean you don’t have to hide your illness and can write about it if you like- but not as an excuse. Disclosure can indeed make admissions see any accomplishments as a sign of resilience. But leaving it to guidance is fine or, like me, you can write a short note to go with the GC notes,
Wait until you get acceptances
I researched accommodations and wrote a letter myself for the physician to sign. The physician did not mind at all! As long as you have that and adequate documentation of your health issues, you should have no problem getting officially registered. EDS is unfortunately still a little controversial as you probably know, but that doesn’t matter- the physician can describe your issues and what you need (with your help).
I have written this before in the forum: I would not evaluate what is going to happen by evaluating Disabilities Offices (often now called Accessible Education Office- if it is still a “Disabilities Office” that is a count against them!). Anyway their function is sometimes to serve as a filter (“guard dog of the curriculum” I once saw them described as) and the real help comes from deans and other administrators, often. it can take awhile to figure out how to work the system. Our best experience was at a college that was small and didn’t have a Disabilities Office!
The Accessible Education Office will give you letters to give to professors, usually without any accommodations listed and no reference to why you are registered.
I would not go near a PT with EDS unless they are specifically trained. I think you could get hurt or at the very least suffer inflammation. I found PT’s who only do massage for me- different reason- but they don’t know how to handle my health issue either. Hyperextension is going to happen with the usual PT! Are you able to stop before hyperextending?
You can request housing that accommodates your needs, whatever they are, including storage. Other students will be helpful. I can’t imagine bullying about this though it can be hard at a young age to have something relatively invisible (I guess the cane helps with that).
I’ll PM you. Look for the green envelope upper right.