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Joanna: Morphea

I noticed an oval spot on my hip two weeks after I'd had a surgery that was particularly scary for me at age twenty-six. My doctor thought it was ringworm and treated it.

I had to see a dermatologist when the spot stayed and I started getting more spots on my ribcage and hips. The diagnosis was morphea. The first dermatologist said I had more spots than he could find on any one person in his medical books and treated me with a steroid tape that I had to cut into the shape of each spot on a daily basis. It was depressing, time consuming and gave me chemical burns, so I stopped using it. My ex-husband said I looked like Lizard Lady of the Circus and I never forgave him.

Later, I saw another dermatologist because I was tired of dealing with the thick, dry skin and I was still getting more spots. She was concerned about my developing lupus and she ran tests. The tests showed no lupus but I was told there was no cure for the morphea and it should run its course in about ten years.

I was already embarrassed to wear a bathing suit; I had brown patches on my back that looked like big bruises.

When I was pregnant with my daughter, my husband was practically accused of beating me. I had huge spots in various stages all over my belly, my ribs, and my back.

Some spots are oval. Some have no shape. The spots on the inside of my elbow-bend have faded but I still get new spots on my body. They get bright pink when I am upset and I get new spots if clothes rub my skin tightly. To this day I haven't found a lotion or moisturizer that calms them.

I have had people ask me if I've been cut, burned, and beaten. After my divorce, I considered putting body makeup on when I started to date. Lately, I've noticed my hands feel tight inside their skin and I don't know if it is related to the morphea or if it is just arthritis, so off I'll go back to the doctor. But I won't go back to the one who said it would burn out after ten years because it's already been twenty-four years since the first spot appeared.

I noticed shiny patches on my maternal grandmother's knees a couple of years before she died at eighty-six. She had it too. I pray my daughter doesn't develop it.

It frightens me because I have so much of it and it won't go away. I wonder if my lungs will be affected because sometimes I wake up and my chest feels constricted. Antidepressants only help so much and I really hate my body.

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ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

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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