Why me? How I came to terms with psoriasis
By Julie Edgar
I first noticed some redness and some dander on my elbows at the start of my freshman year in college. My mom took me to a dermatologist and the diagnosis was quick: I had plaque psoriasis. The doctor said it was a chronic disease that plagues families and usually gets worse over time. He sent me home with a tube of ointment and warned me that stress could make my symptoms worse.
I barely spoke on the drive home. I had just started my adult life, tasting the freedom of living away from home, and now I was suddenly trapped by a nasty skin disease (and my mom’s car). What kind of social life could I have with this unsightly affliction? No one would want to come near me. And they would pity me. Yuck. Why me?
I have asked myself this question many times over the years. Was it the ulcer I had in high school that triggered psoriasis? That terrible sunburn I got while on vacation in Florida? Emotional trauma? Staph infection? Strep throat? The tons of antibiotics I took when I was a kid for ear infections? A spiritual deficiency?
I was diligent about the treatments, which worked until they no longer worked. I received cortisone injections into the scale. I took tar baths. I have used all known creams and ointments, been blasted with UVB light, and had a short-lived flirtation with methotrexate, an immunosuppressant that slows cell growth, mostly in cancer patients. I tried fish oil supplements, followed diets that promised to cleanse the skin, visited a psychic, and volunteered for clinical trials. I have read new research on psoriasis and any other material that might help me.
The hamster wheel of psoriasis treatment totally stressed me out. The scales spread to my joints, arms, shins, wrists, and ankles. I no longer wore short sleeves, shorts and skirts, and avoided romantic relationships. I gradually put more distance between myself and others without really realizing it. I felt angry. I withdrew.
Having a chronic illness can be lonely.
Having an illness that requires constant care is also exhausting. It finally occurred to me that psoriasis was taking too long and I knew I had to make a change. I stopped the treatments which 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 disease than I did.
Then, about 5 years ago, my face broke out in a rash that looked like rosacea. As it turned out, it was psoriasis that had found its way north. 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 in psoriasis. They are serious and have no end date.
I took the plunge.
With the help of my doctor, I can get the wonder drug at little or no cost. Today my skin is clear for the first time since I left college. It’s like I never had the disease.
But I do.
And the habits and worldview developed over the years of living with psoriasis haven’t changed much. I spend most of my time in solitary activities like reading, walking my dog, listening to music and podcasts, and cooking. I don’t show a lot of 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 my car, I find a way to fix it.
I still wonder why this disease chose me. I also realize that it doesn’t matter. Everyone is fighting some battle whether we can see it or not. The key is to be compassionate with others and with yourself. It is the only path to recovery.
Julie Edgar has lived with plaque psoriasis for many years. She learned lessons from illness – such as self-reliance and compassion – and thus became a wise consumer of health care. She is a member of her city’s city council, journalist / communications professional and a proud mother of two college-aged sons.
Photo credit: Marjan_Apostolovic / iStock via Getty Images