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Emma C: Living with Localized Morphea

I've never worn a bikini.

I've never worn a bikini. The deciding factor in whether I can have the adorable dress in the store window is how much coverage it offers from behind. When I was married, I did my best to make sure my husband never saw me dressing.

This is the only life I've known. Some of my earliest childhood memories are of my mother taking me to see doctors who were baffled by the strange marks on my back. She told me they appeared when I was only three years old, the red blotches that formed into white circles.

Twenty years later, the white spots seem to be slightly better. But it's hard to say. Did they improve with time, or do they only appear somewhat smaller because I've grown up?

I was biopsied and diagnosed over a decade ago. Up until a few years ago, I went from dermatologist to dermatologist hoping that someone would know of something I could do to improve my appearance. I received the same cold, flat response from all of them, that it was "burned out" and I was "done".

Morphea is both always on my mind, yet something I hardly think about. I censor my wardrobe, my relationships, my activities out of lifelong habit. Though it isn't as though the morphea on my back is also the first thing on my mind each morning.

What does concern me is the possibility it will spread. Until I was thirteen, I'd use a separate towel to dry my back after showering. Sure the doctor said it wasn't contagious, but so little is really known about this disease, that I wasn't going to take any chances.

These days I'm haunted by the same fear. Not out of ignorance that I'll cause the morphea to spread through physical contact, but because I've read up on the disease, and I know sometimes localized becomes linear, sometimes what was only on someone's torso appears on a limb, a face.

About two years ago, those familiar red blotches showed up on my back again. It breaks my heart. That sounds vain, I know, but as a girl who lived her teen years, a young woman who is living her early twenties with something so cosmetically unacceptable, it's hard for me to believe that beauty is more than skin deep.

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!

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