My Rare Disease Has Caused Me So Much Pain – But It Has Also Given Me Perspective

It took me almost 30 years to meet someone who looked like me.

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They say that there's no such thing as "normal" and everyone has an oddity that makes them feel different or insecure. As an adult, I can see the truth in this, but as a kid who was diagnosed with a disfiguring disease, I felt alone in my altered appearance. This may seem like a child's tainted perspective, but until I was 28 years old, I never met anyone who shared my same deformities.

When I was 8, I noticed red spots emerging on my hands. Painful ulcers formed on my fingertips and would throb with the relentless intensity of an elephant's heartbeat. I could no longer sit comfortably on the floor and was losing the ability to make a closed fist. Running down the block left me breathless, and my hands turned purple if I held a cold can of soda. My mom took me to a dermatologist who told us the ulcers on my fingers were warts and began freezing them off. This went on for two years until one Friday afternoon we couldn't get an appointment with my regular dermatologist. We went to see a new doctor, who held my hands in his, looked my mom square in the eye, and said, "Your daughter has scleroderma." I had never heard this word before, but almost instinctively, I asked, "Is that why I can't make a fist?'

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Scleroderma is a complicated disease that affects each patient differently. In its best form, it causes tightening of the skin, disfigurement of limbs, painful calcium deposits, and telangiectasia, which are red spots that can appear all over the body. In its worst form, scleroderma can cause fatal organ failure. There are an estimated 300,000 Americans living with scleroderma. Only 2 percent of all cases are juvenile, which explains why I never met anyone who looked like me.

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My physical transformation was in sharp contrast to my friends' typical adolescent metamorphosis. My arms were permanently contracted and resembled twigs. My legs became thin toothpicks, my lips almost disappeared, my fingers were mangled and leaked calcium from painful open calcification deposits, and I developed broken capillaries (red spots) all over my body. Few people recall junior high with fondness, but my scleroderma diagnosis turned that time period into a special kind of hell. Nothing says cool quite like a skinny, deformed, spotted girl leaking calcium onto her social studies diorama.

Painful ulcers on the fingers is one of the many symptoms of scleroderma.
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For better or worse, my mom decided to share very little with me about my prognosis. Had Google been around, my childhood would have been dramatically different. I didn't know doctors told my mom the first seven years after onset is when scleroderma typically causes the most damage and essentially seals one's fate. If the patient's internal organs are attacked, their survival rate is five to seven years. If the internal organs are left alone and a patient survives the first seven years, they're given a strong chance of having a normal life expectancy.

I'm fortunate to have lived with scleroderma for more than three decades. I've learned to handle chronic pain, stares from strangers, and have wrestled with body image issues. Throughout high school and college, I slowly learned how to explain my illness to new people I met, but I rarely said more than "I have a skin condition that makes my skin really tight." Dating was especially tricky for me and I was convinced I would be alone for life. But I fell in love with a guy in college who thought I was beautiful. We've been married for over 16 years.

After graduating with a degree in Elementary Education, I was worried I wouldn't get a job because of how I looked. Despite going on many interviews, I did not land a teaching position my first year out of college. I've often wondered how much that had to do with my appearance versus the fact that I probably had sucky interview skills. Instead, I was hired as a teacher's assistant and was offered a job at that same school teaching fourth grade the following year. I've switched positions, but still teach in the same building 20 years later. Sometimes students ask me questions about my fingers, or comment on how much makeup I wear, but overall, most parents and colleagues have said they only noticed my physical differences when they first met me. Once they get to know me, they explain that they don't see the scleroderma anymore, they just see me.

Although I was happily married, loved my career, and eventually had a baby whom I adore, adulthood still left me feeling insecure with my appearance and wishing I could just be "normal" like everyone else. I hated thinking that the first thing anyone wondered when they met me was what the hell is wrong with her?

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I used to lament over not being able to wear a swimsuit, get a manicure, or run a mile. But everything was put into perspective when I suffered grave complications after the birth of my second child, partly due to scleroderma masking symptoms of preeclampsia. Over seven consecutive months in the hospital, I lost my colon, spleen, and the ability to eat, drink, speak, and move.

They didn't know that my autoimmune disease had trained me to fight like hell.

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During one of my many surgeries, surgeons hit my splenic artery, causing me to hemorrhage, and I essentially died on the operating room table. A team of heroic doctors brought me back. Yet it was years before I genuinely returned to life. I had to re-learn how to walk, talk, eat, and function independently. And all of that was easy in comparison to rebuilding the fractured relationships with my son, daughter, and husband, who had all been severely traumatized by the experience of nearly losing their 31-year-old mother and wife.

Nearly a decade after these near-death experiences, I realize that, ironically, having scleroderma may have saved my life. For months, I lay in the ICU hanging on by a thread. Doctors told my family on multiple occasions that I had a slim chance of surviving the night. But they didn't know that my autoimmune disease had trained me to fight like hell. All the years of suffering from chronic pain and emotional battles prepared me to rage against the physical and mental agony that I endured.

Thanks to the love and support from family, friends, and medical professionals, I made a remarkable recovery. Although I have a permanent ostomy bag and walk with a limp, I'm thrilled to be living a full life and have the privilege of raising my kids.

I take 10 pills a day and visit my rheumatologist, podiatrist, orthosis, internist, and pulmonologist regularly. I also have many tests run every six months to ensure my disease is stable. My medical bills add up (although I'm lucky to have great health insurance), as does the cost of the expensive cosmetics I use to cover up my spots. My special orthopedic shoes are outrageously priced. (It's so sad to spend so much money on shoes that aren't even cute!) I also spend a lot of time and money trying to keep my hands warm and treating the painful ulcers that plague my joints.

Me, with the benefits of cosmetics.

Despite it all, I'm grateful that products exist to help ease my pain and conceal my signature trademark: my spots. I'm also grateful for organizations like the Scleroderma Research Foundation, which is dedicated to finding a cure.

Scleroderma affects my life significantly, and I certainly wouldn't have wished for this diagnosis at age 10; however, living with this disease has taught me a lot about what's important in life and how I want to live mine.

To learn more about scleroderma and donate to research efforts, visit http://www.srfcure.org/.

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