Check out Psoriasis: An Inside Out Disease for more information on this topic.
Vickie Wilkerson, age 51, who lives in Shreveport, Louisiana, was diagnosed with psoriasis 18 years ago. “It started on my left leg; it was just a small area,” she says. “I thought I had gotten into some poison ivy, [so] I went to see my primary care doctor, who diagnosed me right off.”
Vickie’s doctor gave her a bottle of cream, told her to apply it twice a day, and sent her on her way. She felt completely lost. “He didn’t give me any kind of material to read [about psoriasis]; he didn’t really give me any information at all. I was in the dark.”
Coping with Medication Changes
That first treatment wasn’t working. Vickie’s psoriasis was “spreading like wildfire,” as she put it. At one point, 80 percent of her body was covered with plaque psoriasis. “[Psoriasis] took me from a very confident person down to someone who was fearful and ashamed,” says Vickie. “My skin looked awful. I went from an outdoor person to hiding in my house. I was afraid of the unknown; I didn’t know how bad it was going to get.”
With no health insurance, Vickie was left to rely on treatment from the local hospital that provided care to low-income patients, which didn’t even have a dermatologist on staff. She remained on a combination of cream and coal tar for her scalp — neither of which was helping. Finally, one of the doctors helped her to get on a newer medication supplied by the manufacturer.
On the Ups and Down of Treatment
Vickie’s psoriasis is now better controlled with around 20 percent of her body covered — but it took many years, many doctors, many types of treatments, and whole lot of emotional stress. “I put so much faith into that first biologic — that it was going to work and clear things up — and when six months later it didn’t work, it threw me into a tailspin. I got depressed.”
She even went so far to give her husband an “out.”
“I had been married for about a year, and I told my husband I would give him a divorce,” says Vickie. “I didn’t know how bad my psoriasis was going to get and how it was going to affect my life going forward. Lucky for me, he stood by me and said ‘I’m not letting you go.’”
When her treatment finally began working it was like “seeing the sunshine after a heavy rainstorm,” says Vickie. “It’s kind of hard to describe, but it’s just an over joyful feeling — like okay, I finally found something that’s going to work for me.”
Not only did Vickie gain more confidence — “it made a difference in the clothes I was wearing; I’m not hiding anymore” — but she felt less anxious about being around other people. “It made me a happier person overall.”
On the Stigma of Psoriasis
When Vickie’s psoriasis was at its worst, she would wear long-sleeves and pants — even in 100-degree Louisiana heat — but she couldn’t cover her hands. “The glares, the comments,” she recalls. “Going to the grocery store, and the cashiers would try to pick the money out of my hand without touching my hand.”
While the emotional scars still run deep, Vickie has now learned to turn these moments into educational opportunities. “If someone comments, I just flat-out tell them it’s psoriasis. First and foremost, it’s not contagious; you can’t catch it. It’s hereditary,” she says. “I try to educate them so if they see it again, they’re not going to give that other person the same reaction they gave me.” Listen to our podcast Getting Clear on Psoriasis to hear more from Vickie — as well other fellow patients and health care experts — about how to cope with the stigma of psoriasis.
When Symptoms Go Beyond Your Skin
Like many people with psoriasis, Vickie eventually began experiencing joint symptoms and was diagnosed with psoriatic arthritis seven years ago. She also had to start wearing glasses. (People with psoriatic arthritis are at higher risk of developing an inflammatory eye condition called uveitis, which causes eye pain, redness, and blurry vision.) She is also treated for anxiety and depression.
Another aspect of psoriatic disease that Vickie has learned to cope with is chronic fatigue.
It is a lot more than just being tired — “it takes every effort to just lift your hands” — and that’s often hard to explain to those without chronic illness, says Vickie.
To help others understand, Vickie uses the spoon theory. “Let’s say you have 10 spoons; I get up in the morning, take a shower, and get dressed — that uses up one spoon. I start straightening the house and cleaning it up. That takes two spoons, so there’s already three spoons gone and half the day isn’t even over yet.”
Her Wish for Other Patients
Vickie says that her wish for other patient is to have good support — “family and friends who take time to listen and learn and love you no matter what your skin looks like.”
Powerful Podcasts to Help You Live Better with Psoriasis
The Global Health Living Foundation/CreakyJoints is embracing audio storytelling as part of our mission to reach the chronic disease patient community where they are. Click here to listen to one of our many podcasts, including Getting Clear on Psoriasis, The Psoriatic Arthritis Club, Breaking Down Biosimilars, The Health Advocates, Talking Head Pain, MatterofVax, Gut Culture, and more.