i really hate being the “sick friend”

I’m 19 and taking a gap year before college while running my own small business from home. I’ve never really had a close friend group who I could rely on for support. I’ve always had a bunch of scattered, randomly acquired friends who I have good relationships with, but I’m more like a footnote in everybody else’s lives.

I’ve always been lonely but this disease makes it so much worse. I hate sounding like I’m making up excuses not to see people, or like I just want attention or sympathy, or like I’m a paranoid hypochondriac. As you all know, EDS causes so many random symptoms and usually goes with other illnesses as well. When I try to explain that I have issues with my skin/joints/muscles/organs/reproductive system, I’m scared that I sound like I’m inventing some weird random disease. I know I’m always not fun to be around. I look miserable when I’m in pain. When someone asks me how I’m doing, I have to lie but I have a bad poker face, and I rarely have something interesting to add to most conversations about life besides “oh cool, I’m so happy for you” because my life has been consumed by being sick. I’m boring to spend time with at best and annoying or depressing at worst.

When I go out with people, I have trouble walking, standing, or basically doing anything else. I either don’t “look sick”, or I do look pale and tired, so I feel like the “ugly friend” who someone would be ashamed to post pictures with. I have a dark cloud hanging around me as hard as I try to wave it away. People see me as pitiful, and I know pity is something that quickly runs out. I’ve had struggles with my mental health as well so I’m aware that people probably see me as that person who “always has something going on”. I dread becoming a burden or a charity case. I’m tired of people not understanding what I go through and I’m even more tired of feeling scared of being left behind at a time when all my friends are starting careers and relationships and things like that.