So, I've been meaning to blog on this subject for a while. I've found that a lot of people with any kind of rare disease, disorder, or illness, have problems relating to people, because they don't understand all the issues associated with it. I have a different problem. My best friend has EDS, the same type I have, and she has known her whole life. I didn't find out until I was into my teens. So, my friend has it a lot less severely than I do, and she can't understand the constant pain I'm in, or the frequent injuries any more than "normal" people do. She has only ever injured herself in an EDS-related way twice. Once when she dislocated her knee dancing, and once when a nurse dislocated her shoulder trying to pull her into a sitting position when she was still loopy from the drugs they gave her for her c-section. Her knee was put back into place, and she had it properly immobilized, and was in a wheelchair for a few weeks, then she got better, and now she doesn't seem to have any problems with it. She says her shoulder still bothers her a little, but it's only been a few months.
I, on the other hand, sublux my shoulder so often I barely even notice anymore, and dislocate it frequently. I can pop it back into place 'easily' and I've never been hospitalized with a dislocation. By the time I make to the hospital, or doctor there is nothing "wrong" with my joints, and they can't understand how it could have been dislocated, and popped into place again in such a short amount of time, and with no medical help. With my left knee, I dislocated it severely, and when I tried to stand up, the weight of my leg pulled it back into place, and I couldn't get a doctor to listen when I said it was dislocated... They simply didn't believe me. They told me I probably just stretched the tendons or ligaments, and that I should wear a brace when I walk or stand and it should be fine in a couple of weeks. This happened almost 3 years ago, and I still walk with a limp.
Okay... so back on topic... Even though I do have a friend whom I've known since I was a year old with the exact same genetic disorder I have, I still feel all alone, like I have nobody to talk to that could possibly understand me. Oh, and my husband has a disorder similar to mine, but all of his joint issues have specific reasons behind them. His left knee is screwed up because he was hit there with a baseball bat years ago. His hip is screwed up because of a work related injury. So again, it's hard for me to talk to him, and to have him understand that even though you can't SEE anything wrong with me, I am in pain all the time. Since I dislocated my right knee (not as bad as my left) I occasionally don't walk with a limp, and people close to me assume it's because I'm not in pain, but the reality is that I am in more pain than usual, it's just pretty even between the two knees, so I walk without a visible limp.
Joe, The Email, And What I Have to Say
1 day ago