Need Support/Advice

I am diagnosed with hEDS, POTS, MCAS, possible CCI, etc.. and have been told i’m a bit more of a severe case that onset when I was very young. I’ve been feeling very overwhelmed recently with being in constant pain at all times for nearly my entire life, and I don’t know how to keep living like this. Once I have relief from one issue, it feels like 3 more take over. I’ve had to relearn how to walk 3 times and had a complete knee reconstruction at 14 years old. I am sick constantly, and nearly everytime I catch even a “small” cold I end up at urgent care or in the emergency room. It feels like if i do something that makes me happy emotionally, it takes a toll on my physical health severely. I am constantly playing catch-up, but the world moves too fast for me. I have become very distanced from my friends as I cannot do many of the things they do these days (i’m only 22 and basically have to live the life of an elderly person who is allergic to everything if i want to properly care for myself) and I often feel misunderstood. I tell people surface level information about single issues at a time, but it would take hours to explain every way i’m suffering at any given moment, and frankly, i’m tired of explaining myself and trying to get people to understand. Plus, if they do have similar issues, I would never want to put the weight of my problems onto them as well, and we don’t tend to be the most consistent or reliable in terms of emotional presence.

I need so many accommodations at work that it feels like I can barely do my job. Luckily, I have drs notes, but I barely do anything at work and it still takes such an insane toll on me. I have so many appointments every week and miss so much work, it makes me feel incredibly guilty even though anyone would call out in these circumstances. I want to go on disability, but I don’t even know how to begin this process, nor do I know if I would qualify.

If I talk to people about these things, it’s awkward or incredibly overwhelming for them, or they often think i’m oversharing despite me keeping so much inside. If I don’t speak about it, I literally go insane and become hopeless and lonely. I feel like a parasite. I’m too much for everyone, even my partner at times, and the fact that it’s not my fault feels so painful. I’ve had to give up on so many hopes and dreams, I don’t even know what my future holds at this point, i’m just in survival mode. I am neurodivergent which makes it much harder to read the room about this sort of thing. I am exhausted.