Yesterday I had a very fulfilling experience as a result of openly sharing my diagnosis with Fragile X Syndrome. The whole story is not mine to tell, but I think I was able to bring some comfort and hope to someone by relating my experiences. The someone does not have Fragile X, but when a label hangs heavy around your neck the exact wording of said label is not so important.
There have been times when the FXS label felt like it defined me. It was the scapegoat for all of my quirks and flaws. There have been times when the FXS label was a tool to help me play "the system" to get accommodations or services. And then there have been times when the FXS label just meant my genes are a bit funny and having kids will be a bit tricky but really, that's all. Labels are based on numbers and statistics and stanines and standard deviations, and that does not capture the essense of a person at all. It certainly does not capture the essense of me, or the individual who spoke to me yesterday.