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I'm a teen in HS, and struggling greatly with EDS. Going through doctors and all, and it's rotten, but I've been struggling more with the real-world side. I'm trying to get into a medical program run by my school, I would be able to spend next year (my senior year) working in a hospital. Only one or two people apply each year. However, my parents are insisting that because my attendance is so bad I won't get in. I have had 16 absences so far this year, 11 of which were due to a hospital visit. I also have a bunch of early dismissals and ‘late arrivals’ where I've essentially had half days. I am a smart kid, I have multiple AP classes, have A's in my classes. I don't want my chance to get into a good program be ruined by my EDS. I don't know how to advocate for myself. How do you do that in a school setting?? Getting my 504 was hard enough and all that does is give me preferential seating and promise access to the nurse.
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While it is the nuclear option you can always make a list of your symptoms and effects of not accommodating them correctly (be exhaustive). Also document every hospital visit and medical visit with paperwork and documentation.
Then look into mobility aids and other things: wheelchair, cane, braces, &c. Request the accommodations to use whatever of those you can afford and support you best "as needed" (if you fall or have a strain/sprain in gour knee or ankle more than once every 6 months you're a fall risk and should qualify for at least a cane if not a wheelchair for injury prevention). You don't necessarily need an expensive one, but just something. You can find used ones for under $100 and Amazon has a couple models right around the $120 price point.
The sad truth is that if administration, HR, bosses, and teachers don't have a visible sign of how severe a disability is they will always assume it's "no big deal," you're "just applying for advantages but you're fine," &c. If you ask for a wheelchair or cane accommodation at school it's much harder for them to ignore.
Ultimately you take that request to them and say "hey, you're not a doctor, so you can't assess the severity of my disability; this is what I need. If you deny the request please send a duplicate copy to my attorney." Include the name and fax number of an attorney your family has used in the past for something (wills, medical stuff, insurance, whatever). Hopefully they'll just rubber stamp the accommodations just to avoid the scrutiny. It's amazing how cooperative government administrators get when there's even a 0.1% chance of being named in a lawsuit - especially school administrators - in any SS1985/ADA Lawsuit.