As told to Shishira Sreenivas by Amber McKnight
When I first started noticing white flaky patches, it was almost a little burning behind my ears. It was March 2019 and I was 24 years old. I work at Disney World and I have to wear a hairnet and a funny hat. I figured it must be from the sweat and irritation while wearing them, since the cap and net are in that place. I just feel like they’re rubbing me the wrong way.
I went to urgent care and showed it to them. I wish there was a cream or ointment on top. They gave me topical steroids and told me it should go away a bit. I thought, “Great!” I’ve had eczema for a while, so I thought it might be a flare-up. But I decided to keep watching it.
Steroid creams can help. The patch is gone.
In 2020, I started a physical therapy school in Atlanta, Georgia. By the end of the year, eczema-like patches started to spread all over my body: abdomen, back, chest, arms and legs, especially around the crooks of my elbows and the back of my knees. However, the patches above my neck are the worst – the top of my head, behind my ears, and the nape of my neck.
But every time I show it to my doctors, they always dismiss it. They say, “Oh, that’s just eczema.”
Psoriasis can affect your quality of life
I look like a scaly lizard. I was embarrassed and frustrated. Basically, you can see everything, so I had to cover everything up. Atlanta’s summer heat doesn’t help either.
For school, especially during PT labs, I have to wear my hair up and wear a mask. That means everyone can see my scaly, troubled skin. They could see chunks of white stuff coming off my skin. In fact, someone came to me saying I had rice in my hair.
PT school requires a lot of hands-on touch and therapy. For the lab, we had to take off our clothes. I can’t do it at all. It makes me very uncomfortable. So I wore full-length leggings and a sweatshirt in the height of summer. Plus, the patches are either peeling, itchy, or painful. I started skipping some of my labs.
I have had many skin issues in the past, but these patches look different and fresh to me. It looks similar to the patch I put up in 2019. It can’t be eczema. These patches have different textures, are mostly connected, are very thin, and peel off a lot. too frightening.
At this point, I decided to see a dermatologist.
Getting a psoriasis diagnosis can be tricky
I went to a lot of doctors – primary care physicians and dermatologists. They all said it didn’t look good or it was just eczema. Someone even sent me to a wound care specialist. They said they couldn’t fix it. Some spots became infected with staph bacteria.
At this point, I was going on two appointments a week for a month. I tried some medicines but nothing helped.
A dermatologist decided to run an allergy test to see if I was reacting to something. When I went back and read my results, it was a different dermatologist than I usually see. She happened to cover for another doctor.
She looked at my scalp and said, “That’s 100% psoriasis. I don’t know why no one says that to you.”
They took biopsies from several different sites. Some are eczema, but it turns out, others are psoriasis. My type is called guttate psoriasis.
It can happen after you have strep throat. I get strep throat and staph a lot. This apparently leads to confusion in distinguishing eczema from actual psoriasis. However, the patches on my scalp are plaque psoriasis.
I finally got my diagnosis in January 2022.
Find out how to manage stress and treat psoriasis
After I was diagnosed with psoriasis, they gave me injections which helped me a lot. All doctors say managing stress is important.
I didn’t realize I was stressed. I mean, I was working at Disney World when it all started. I think it’s the happiest place on earth. But I took some steps to change my lifestyle.
The most important thing I did was I stopped using any lotions or creams that contained petroleum jelly. I believe it caused some irritation. I switched to cleaner products and it made a world of difference.
I often feel my scalp or elbows for psoriatic plaques. If I feel spots starting to form, I immediately get more sleep, drink more water, and figure out what is stressing me out. I basically recoiled from the constant hustle. Now, I enjoy taking long walks in nature. It helps me stay calm.
I also think that when I’m stressed I’m more prone to scratching my arms. I think it’s my body’s subconscious response to distract me from the stress. But scratching can make psoriasis worse. So, I’ll do whatever it takes to keep myself from scratching. I wear long sleeves or a jacket. Sometimes, I just sit on my hand and remind myself to stop it.
But overall, once I started the treatment and changed my lifestyle, my skin was relatively calm. If I notice that the plaque is getting worse, I go to the doctor.
find a good support system
Coping with an autoimmune disease like psoriasis can be difficult in your 20s. If I could talk to my younger self, I’d say, “It’s okay. You’ll be fine. Stop scratching, stop looking, stop obsessing.”
Obviously, this is difficult to deal with, but it’s important to stay calm, take a step back, and reassess the situation.
Finding a good support person or system is important. I was lucky to have a really good friend in Atlanta when this happened. She always let me vent.
It can be helpful to have someone go to the doctor with you, as it can be intimidating. I have had times when I lost hope. It’s always good to have someone who knows what’s going on, or who can be there for you when you start to plateau or feel down.
And continue to defend yourself. At the end of the day, you know your body better than anyone.
