happy disability pride month to people with rare or confusing clinical findings! including:
- people who received test results their doctors did not understand!
- people who had to get expensive and/or unusual testing, and the results didn't provide clarity!
- people who have abnormal test results, who's doctors aren't sure if the results have any significance, or what that significance is!
- people who had to learn to read studies in order to research their conditions, because the information has not been made accessible to the general public through articles and informative sites!
- people who can't even find studies to read in the first place!
- people who might never know if the results they have mean anything!
- people with unexplained symptoms that could be related to an unusual test result, but they have no way of knowing!
- people who are worried that their results could be pathogenic, but have no way of finding out!
sometimes, disability just isn't simple. it is really hard to have something markedly different about your body that doesn't make sense - not to you, not to professionals. when i was being tested for genetic disorders, they found that i had a duplication in one of my chromosomes, and my doctor told me that it could mean nothing, it could have caused some of my issues, or it could cause me issues in the future.
it was scary! it's been almost two years, and i don't know what it means. there isn't a single case report or study on this duplication. it is deeply disquieting to think about. i don't know what i'm meant to do, or if i can do anything at all. i have plenty of symptoms and features that could be related to it, but there is essentially no way for me to figure it out.
am i still trying to? hell yeah! am i going to try and get into contact with genetic specialists? hell yeah! but if nothing comes out of it, that's fine. it isn't a failing on my part, and it isn't irrational for me to be concerned or upset about it.
your condition does not have to have a name, or a mayo clinic page, or even a study on it for it to be real. your concerns are valid, and you deserve love and support.
