Patient Insider: Diagnosis Story

Patient InsiderHey, I'mJoniPsoriasis can be hard.After more than 20 years,I should know.

Psoria-WHAT?

When I was diagnosed in 1998, there was no internet. Nobody had heard of psoriasis back then.

It all started when I was 15. One day I woke up covered in red spots. My chest, arms, legs, back, scalp – everything was covered. And it kept spreading. At first I thought I was having an allergic reaction because it came on so fast.

I got my psoriasis diagnosis a week later. The doctor handed us a bunch of pamphlets with photos of skin in them. My grandmother had a mild case so we knew a little. But we had to do a lot of research ourselves.

“Sometimes my skin feels too small for my body.”

Oils, creams, and Saran Wrap

I really struggled with the idea that this might be a lifelong disease. I thought I'd get a cream or pill and my psoriasis would be gone in a few weeks.

My treatment started with all the things that felt sticky on my skin. You know, oils, creams, and foams. I wanted to make sure that they stayed on my plaques. So I’d wrap my legs in Saran Wrap and wear sweatpants over top. I slept that way. I can still hear the crinkling when I’d roll over in bed. The topicals helped, but didn't completely get rid of my psoriasis. So I added light treatments three times a week. That helped some, too.

Around 2005, I started biologics. Instead of just treating the symptoms on my skin, my doctor was treating the symptoms within my body. It took some tweaking and trial and error to find something that worked for me.

It can be hard to feel like you’re in control when living with psoriasis. Scroll down to read about a few things I learned along the way.

Community Poll

Stress is my biggest psoriasis trigger. What’s yours?

Managing my psoriasis is an everyday thing

I’m always thinking about taking care of my “whole self” when it comes to psoriasis. Each day I make sure my skin is moisturized, I'm eating well, and I’m hydrated.

Stress is a huge trigger for me. Exercise helps. Writing does, too. I keep a journal. I blog. I constantly make lists to keep my brain free. Sometimes if I have too much swirling around in there, I kind of freeze and shut down a little bit. Making sure that I'm aware of what's going on with my mental health is really important in managing my psoriasis.

Making the beach my happy place again

I grew up 20 minutes from the beach. After my diagnosis, I stayed away. I didn't want anyone to see me in a bathing suit. But soon I realized that I didn't want psoriasis to take the beach from me.

So I went back and wore whatever I wanted – spots and all. I talked to a lot of strangers about psoriasis. The more I talked, the more I learned about myself. And the more I was able to let go of psoriasis’ power over me. I didn’t want my whole life to stop because I had this disease. There were things I wanted to do and people I wanted to be with.

That doesn’t mean there aren’t tough days. When I’m flaring, getting dressed can be a challenge. I have to be very thoughtful about what I wear. Are the fabrics comfortable? Will my clothes rub on my skin? Am I going to be hot? Something as simple as waking up and getting dressed is suddenly not so simple.

My goal: to be as comfortable as possible. I'm a typical suburban mom. I wear leggings and sweaters. But not when I have a flare. My legs are heavily impacted and I can’t wear anything tight. I have wide-leg cotton pants that I put in rotation. They’re easy to wash. That’s important, since I’m also putting on tons of moisturizer.

When you’re flaring, feeling confident can be difficult. My advice? Dress for how you’re feeling. Find the parts of you that you feel good about. Just washing my hair can help me feel better. Worried people will talk? Telling them “Hey, it's psoriasis – it's not contagious” can change the conversation.

“Don’t let psoriasis determine who you are.”