What it’s really like living with psoriasis

Avatar By | October 28, 2019

Psoriasis is an autoimmune condition that causes a build-up of skin cells that can look whitish and flaky or red and inflamed. When you think of psoriasis, you probably think of irritated, patchy skin. When I think of psoriasis? It’s the emotional side that comes to mind. 

I remember the first time I was shamed for a flare-up like it was yesterday. I was at the grocery store picking up a few odds and ends. While checking out, I had a pleasant conversation with the cashier and was waiting for him to hand me my change. He was holding it just over the palm of my hand when I saw his eyes fall on the red scaly patch on my wrist. The smile fell from his face, and he pulled his hand half-a-foot away to drop the change into mine. It wouldn’t be the last time something like this happened. The sudden, exaggerated shift in his demeanor, and the way he recoiled in disgust and fear stays with me.

I know it might not sound like a big deal. I know I’m not supposed to care what others think, that I’m supposed to be comfortable in my own skin. But that can be so difficult when it’s my own skin that’s betraying me. How could I feel good about myself now that I knew the itchy little area on my forearm has become a physical repellant to those around me?

The emotional toll of living with psoriasis

I spent many years trying to come to terms with the flaming patches popping up all over my skin. When the flaky, sometimes bloody little spots spread from my scalp to my elbows and knees, I started wearing longer shorts. I switched from wearing T-shirts to button-downs, strategically rolled to just below the elbow. “This is fine,” I told myself. “I can deal with this.” As the plaques began to show up on forearms, hands, and calves, I stopped rolling my sleeves, and I wore full-length pants—no matter the season or location. “Laying on the beach in jeans and a full-length button-down is normal,” I thought. It didn’t matter if people thought it looked odd, at least they weren’t afraid of me.

It turns out, I’m not alone. “It can be psychologically devastating for patients who have visible red patches on their body,” says Doris Day, MD, a board-certified dermatologist. “I have patients who are young women who won’t wear skirts or shorts if they have any patches on their legs and other patients who won’t go on dates or job interviews if they have hand involvement.”

I lied to myself for almost two years. I hid my skin away and told myself I was okay. All the while I was feeling increasingly disconnected from the people around me, who I wouldn’t allow to see my skin anymore. It wasn’t that they would be cruel. No one ever was, at least not intentionally. It was because I didn’t want to see the look in their eyes when they came to rest on my skin. I didn’t want to explain what the redness was. Or more honestly, I didn’t want to lie out of shame, again. The condition that started with a little irritation behind my right ear was consuming me, and was threatening to ruin my life.

A growing list of treatment options

Biologics were becoming more common at the time, but despite research showing they were relatively safe, I was still uncertain. As I read about these seemingly miracle injections that could rid me of my constant physical and mental discomfort, I didn’t care if it was safe. My thinking was if I could take a pill that would cure my psoriasis, but shave 10 years off the end of my life, I would take it. I realized then the toll this disease was taking on my life. I needed to do something to save myself from the downward spiral. 

So I took the plunge, and I couldn’t be happier that I did. There were a few treatment options, but I went with Stelara. And it has changed my life. Am I 100% clear? No. I still apply steroid solutions behind my ears. I still need to treat the crevices from time to time. And there’s a decent size, persistent spot on my left calf I get treated with cortisone injections. 

“Topical steroids can be very helpful for psoriasis,” Dr. Day says. “Steroid injections can also be helpful but not an ideal long-term solution. I believe that psoriasis is best treated by managing a number of factors, from diet to stress to skin care. It often requires a healthcare team that could include your dermatologist, rheumatologist, cardiologist, and primary care physician.”

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Learning to accept psoriasis (and find support)

It doesn’t matter that every single plaque isn’t gone. I walk around in shorts and T-shirts without trepidation. I don’t fear the eyes of friends and strangers. I’m finally comfortable, if not a little itchy, in my own skin. 

If you’re out there living with this condition, if you’re wearing long sleeves in the sweltering heat, if you avert your eyes from the gaze of others for fear of what you may see—know that you’re not alone. Know that there is hope. If you’re considering giving up, don’t. There are others out there who have felt the same despair. There are others out there who thought it would never get better. There are others out there who have lost hope. 

Most importantly there are others out there who have overcome these issues. There is hope, even if it doesn’t feel like it. Keep trying! Talk to your dermatologist. Your salvation could be one treatment away. If it’s not available now, it may be soon. New treatments are on the way. And even if there isn’t a treatment that works for you, you can learn to accept your skin and feel good about yourself. Don’t give up!