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Val: Systemic Scleroderma

I am afraid to find out too much about the disease because I do not want it,
but I do wonder what is going to happen to me next.

I am Val and I was diagnosed in June of 2001 with Systemic Scleroderma. Actually, I was diagnosed on my birthday, what a present!

I guess I just wanted to be able to write about the disease so that others may know how it all started with me.

Scleroderma, what is it? I still do not know for sure. I do know that since I have been labeled with it my life has changed drastically.

Once diagnosed, I had to begin taking a regimen of different drugs. The effects made it necessary to take a two week leave from my job. When my employer found out what I had, he moved me and changed my job. When I went back to work I was told that I no longer had my job, as it had been given to someone else. People acted as if they were afraid of me. Even my closest friends and family weren't sure how to treat me. Why? So far I do not look any different or act any different.

I think that people are afraid of me because they do not know what it is. This is how I feel also. I am afraid to find out too much about the disease because I do not want it, but I do wonder what is going to happen to me next.

I have scleroderma in my esophagus. It causes me to vomit a lot. My skin is getting tighter and my hands hurt. I feel tired a lot and I hate taking all of the medications. Why so many drugs? They tell me it is to slow the disease down; how do they and I know if the scleroderma is slowing down? It seems as though it is gradually getting worse but I am not sure. I do not know what and how I am suppose to feel.

My husband seems to have very mixed emotions about how to handle my disease. He tries to keep me upbeat, but he does not like to hear about the pain and how I am feeling. He says that all I think of is the disease and when I am going to die.

Well, this is enough to start with and I will update later.

To Contact the Author

ISN Story Editor: Judith Thompson Devlin

Judith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

ISN's Voices of Scleroderma Volume 2

The story on this page is featured in our book, Voices of Scleroderma Volume 2! ISN.

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