It was almost 20 years ago when my manager called me into his office, but I remember it like it was yesterday. He asked me to close the door. He told me that some of my coworkers had expressed that my psoriasis was “unsightly” and that I needed to do a better job of looking more presentable. It was like a punch in the gut. Did they think I could control my psoriasis just because it offended them?
According to measurements at my dermatologist’s office, I was, in their words, “more than 100 percent covered” based on the number of palm-sized areas of coverage. My scalp was covered and the flakes covered my shoulders, my chair and the floor around me. My back was so severely covered that my skin barely looked human. The slightest move would cause my back to crack and bleed. I wore long-sleeve shirts and long pants every day so that nobody would have to see my arms and legs.
On top of the skin issues I was dealing with, I was also in extreme pain from psoriatic arthritis. My sense of self-worth was, as you can imagine, nonexistent. People were repulsed by me. I was sometimes repulsed by myself.
When the drug study that I had enrolled in ceased to be an effective treatment for me, I talked to my doctor about finding something that would really work. He thought that I would be a good candidate for a biologic that had recently become available. Then I learned that this medication was given via injection every week – and that I would administer this injection myself. It took a while for me to wrap my brain around the idea of giving myself an injection, but I finally did it.
New lease on life
After just about three weeks, I could see a huge difference. My skin was clearing. Even my joints felt better! Within a few months, I was a brand new person. My skin was completely clear. My scalp no longer flaked. I could walk like the 30-something person I was, rather than with the gait of an elderly person.
I left my job. I was still angry that coworkers couldn’t accept me when I was suffering. Looking back, I wish that I had been able to educate them. I wish that I used my voice to help them understand my struggle. It still makes me sad when I remember the words my manager said to me, but it makes me sadder to think about how I didn’t have the knowledge at that time to make it a learning opportunity for him and the rest of the team.
My life today is a life that I am very proud of. I have a great job that I enjoy at a large software company. My manager is understanding and my colleagues respect me. In fact, they have sponsored me in several Team NPF Walks.
With my current treatment, my psoriasis is almost completely under control. Occasionally, I'll have a small patch on my scalp or my elbows – just enough to be a nuisance. The really funny thing is that at the National Volunteer Conference in Chicago last year, I found myself wishing that I had a little exposed psoriasis just to feel that I fit in!
I speak up for myself. I share information about psoriatic disease on social media. If my symptoms flare and someone asks questions about it, I proudly answer them. I have undergone several surgeries to repair joint damage from my PsA. I had to be off my medication for a month or more for each. Each time, my psoriasis would come out of hiding. People asked questions, and it was so nice to feel comfortable in my skin and know that this was an opportunity to educate.
My hope is that someone will be able to use this information. Maybe they will be kinder to someone with flakes in their hair. Maybe they will offer to help someone. Or maybe, what they learn from me will allow them to recognize symptoms that they or a loved one are experiencing.
Get workplace tips
Learn more from Julie and others who are working with psoriatic disease. Our new PsA Workplace Guide offers tips to talk to coworkers, improve your workspace and manage pain on the job. Get a free guide.
Julie Greenwood lives in Cary, North Carolina, with her husband, Scott, and daughter, Nora. She has lived with psoriatic disease since 1991.
Driving discovery, creating community
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