Friday, September 19, 2008

The perks of sharing

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.

4 comments:

CC said...

You have Fragile X? The only individuals that I've met with that diagnosis were students and/or patients of mine and very affected from this condition. It is great to hear there is a large range of how this syndrome affects people.

little.birdy said...

Most individuals with Fragile X are more affected than I appear to be, even for a female with a X-chromosome related condition. I'll be blessed if I understand the mechanics of it all. :)

Lori said...

Hi!
I have a question on my blog about PECS and was wondering if you would check it out. I would love your opinion. Thanks!

Marla said...

Thanks for sharing this inspiring post. Considering M's rare chromosome disorder these posts do make me think.