Everyone is nervous about meeting someone for the first time. Concerns run through your mind as you try to get to know each other. I just have one more concern than most people. When is the appropriate time to tell this person about my disease, and how will s/he react?
I was diagnosed with morphea scleroderma when I was seven years old. I was immediately referred to a specialist who was fortunately in the same city at the time. It quickly spread all over the left side of both legs, though it is far worse on my left leg. It is noticeably thinner than my right leg, and I suffer terrible arthritis in my left toes, ankle, knee and hip. For the first few years, I was taking experimental drugs, having blood taken on a routine basis and the whole time, not knowing what all of this was for.
A part of me hates the fact that this happened to me at such a young age, because this was something I had to deal with in my teenage years. And anyone who had to face these challenges knows why that's such an incredible hurdle. I also never asked questions. My parents took care of it and that was that. They had it under control and I'll take these medications and I'll sit still while an incompetent nurse misses my vein several times while trying to take a blood sample. I also didn't ask any questions. I knew that there was something different about the way my legs looked, but that is the only thing there was to it. I didn't learn until my high school years that it was an autoimmune disease, a form of arthritis and that there was absolutely no explanation as to why this happened.
I acted out as a teenager, so resentful and so angry at the world for having to go through this. Sixteen is the age that I will never forget. I completely gave up on trying to be attractive and was constantly selling myself short. It was nothing more than a curse. And I felt alone.
It was years later that I became okay with it. I grew to a full height of 5'9" despite what most doctors said, and it has been dormant since I was diagnosed sixteen years ago. The people close to me don't even notice it anymore. It has become a part of me. Still, when I meet people, they ask, and I'll tell them, or I just casually mention it to avoid any uncomfortable stares. But then there are the people you are dying to tell simply because they didn't ask or because I want them to know. When I told the man who I now love, the first words out of his mouth were, "Are you going to die?" and when I said no, he said, "Then I don't care." And I will not soon forget those words. I was self conscious in fear that others would care, or find me ugly because of it. He didn't care. And maybe someday, neither will I.
Email: [email protected]
Story edited 07-28-07 JTD
Story posted 08-16-07 SLE
ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Thompson Devlin
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SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.