I have a rare connective tissue disorder (Ehlers Danlos syndrome) that most closely mirrors (and is most often misdiagnosed as) chronic fatigue syndrome in terms of weakness and fatigue, but which is generally much more painful and dangerous. Have had it all my life but spent the first three quarters of my life undiagnosed. When I was a kid and too weak for instance to do even one complete pull-up, despite being desperate to do so in order that other kids wouldn't look at me funny, I was told that I wasn't weak; only lazy. With my extremely pale, thin, and sickly appearance I struggled to make friends, and was bullied mercilessly -- and having very complicated dynamics in my home I was without safe haven anywhere.

Many who have my disorder struggle with depression, but it's hard to separate that from all of the dynamics that tend to come with it, even in the few cases where it is diagnosed early; not to mention severe pain and other comorbid physical discomforts which are also significantly impactful to psychological survival. For those not diagnosed early, the frustration of being faulted for effects of the body which one has little to no control over is extremely devaluing.

I think that a great deal of difficult psychological damage occurred for me as a direct result of my disorder and its effects, although the responsibility for that is shared with the unsafe environment I experienced in my home life, so it's hard for me to say exactly how much.

And although my mother loved the attention she got taking me to the pediatrician on a fairly frequent basis, she loved the answer she got from him which was along the lines of "she's fine" and "she'll grow out of it" whatever that meant. She was more worried about hearing that she was doing all she could do as a mom (even if she wasn't) than about getting me real help with what were pretty apparent medical difficulties.

What I have is known as an invisible disability, because it is, but even now my mother will kvetch and moan about how she saw someone park in a handicapped spot (she just got her permit though I still haven't heard on what basis) who looked perfectly healthy to her, and how she shot them a dirty look for "taking her spot". I try to remind her to consider that you can't tell by looking at someone, and she just says "Invisible disability, B.S.!"