Thank goodness I haven't had pain. But even those with lesser problems share much of what you write about here. Growing up "different" is hard enough without a condition which, in my case, hadn't been named or defined yet. Even after it appeared in "the literature", no doctors had heard of it for many years and many still haven't. It's hard not being believed.

Thank you for this article. One of the most important paragraphs, IMO, is the one ending "...can seriously erode a young person’s self-esteem and sense of self-worth." Yes, and that doesn't (necessarily) go away in adulthood.