By Julie Edgar
I first noticed redness and a few scales on my elbows at the start of my freshman year in college. My mom took me to a dermatologist and the diagnosis was swift: I had plaque psoriasis. The doctor said it was a chronic disease that ran in families and typically got worse over time. He sent me home with a tube of ointment and warned that stress might aggravate my symptoms.
I barely spoke on the car ride home. I had just begun my life as an adult, tasting the freedom of living away from home, and now I was suddenly imprisoned by an ugly skin condition (and my mom’s car). What kind of social life could I have with this unsightly affliction? Nobody would want to get near me. And they’d pity me. Yuck. Why me?
I’ve asked myself that question many times over the years. Was it the ulcer I had in high school that triggered the psoriasis? That terrible sunburn I got during a Florida vacation? Some emotional trauma? A staph infection? Strep throat? The loads of antibiotics I took as a kid for ear infections? A spiritual deficiency?
I was diligent about treatments, which worked until they didn’t. I got shots of cortisone into the scales. I took tar baths. I used every known cream and ointment, got blasted with UVB light, and had a short-lived flirtation with methotrexate, an immunosuppressant that slows cell growth, mainly in cancer patients. I tried fish oil supplements, followed diets that promised to clear the skin, visited a medical psychic, and volunteered in clinical trials. I read up on new research into psoriasis and any other material that might help me.
The hamster wheel of psoriasis treatments totally stressed me out. The scales spread to my knuckles, upper arms, shins, wrists, and ankles. I no longer wore short sleeves, shorts and skirts, and avoided romantic involvement. I gradually put more distance between myself and others without fully realizing it. I felt angry. I withdrew.
Having a chronic condition can be lonely.
Having a condition that requires constant care is exhausting, too. It eventually occurred to me that psoriasis took too much of my time, and I knew I had to make a change. I stopped the treatments that took too much energy. I exercised more and tried to be kinder to myself. I used my time to learn new skills. I finally found a compassionate dermatologist who knew more about the condition than I did.
Then, about 5 years ago, my face broke out in a rash that looked like rosacea. It turned out that it was psoriasis that had found its way northward. My doctor looked me in the eye and asked me to reconsider taking a biologic, a class of injectable drugs that block the inflammatory process of psoriasis. They are serious and don’t have a treatment end date.
I took the plunge.
With my doctor’s help, I am able to get the miracle medication at little to no cost. Today, my skin is clear for the first time since I went away to college. It’s as if I never had the disease.
But I do.
And the habits and worldview developed over years of living with psoriasis haven’t changed much. I spend most of my time in solitary pursuits like reading, walking my dog, listening to music and podcasts, and cooking. I don’t show much skin as a rule. I don’t swim in public pools. I choose my companions carefully. I pray more. If something breaks in my house or car, I figure out how to fix it.
I still wonder why this disease chose me. I also realize it doesn’t matter. Everybody is fighting a battle of some kind, whether we can see it or not. The key is to show compassion to others and to oneself. It is the only path to healing.
Julie Edgar has lived with plaque psoriasis for many years. She has learned lessons from the condition -- like self-sufficiency and compassion -- and has become a savvy health care consumer as a result. She is a city council member in her town, a journalist/communications professional, and the proud mom of two college-age sons.
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