As told to Erica Rimlinger
My grandmother had psoriasis, an auto-immune condition that affects the skin. Although it can be inherited, none of her children have it, none of my 10 cousins have it, and none of my three brothers and sisters have it. But I do.
In fact, I’ve been living with it for such a long time I don’t remember not living with it. But my journey with psoriatic arthritis (PsA) began just last year. PsA is a form of arthritis that can affect people who have psoriasis, and although it can be controlled, it can’t be cured. It can range from mild to disabling. One year after my PsA diagnosis in 2020, I’m still more or less coming to terms with it, and I’m not yet sure how serious my case will be.
Psoriasis is such a visible disease it’s hard to miss. When I was a child, I only had a few flare-ups and they would start with a couple of small red spots here and there that almost looked like measles or chickenpox.
When I turned 15, a flare-up went into overdrive. Overnight, my spots doubled and then doubled again until, within just a few days, I was covered in itchy, burning spots. One day, as I ran onto the lacrosse field, I heard some teammates’ parents ask my parents if I was contagious. I wished that I — and my itching, burning spots — could become invisible. I was a teenager with self-confidence that was only half-built. If I had to stand out, and I definitely didn’t want that, why couldn’t the attention be for something I wanted, like winning a lacrosse tournament? My friends didn’t care, but I worried: Would any boy want to ask out the girl with the persistent rash?
All the big moments in my life — graduations, my wedding, the birth of my children — have included psoriasis in some way. Over the years, I’ve used medications to control the symptoms and outbreaks fairly successfully, but psoriasis still snuck in. For example, I had to choose my wedding dress not knowing if I’d be in a flare-up that day. Should I choose my low-backed dream dress, or pick one that offered a lot of coverage but I didn’t like as much? In the end, I chose the gown I wanted. My husband loved me for me, and so did every person at the wedding. I felt like myself in the dress I’d chosen. As it happened, my psoriasis did not flare up on my wedding day.
If you have psoriasis, you have a higher chance of getting PsA, so the fear that I could develop the condition loomed in the back of my mind. I always knew there was a chance I could get it. Knowing that I’ve had psoriasis for such a long time, my doctor would ask at every appointment, “How do your joints feel? Are you having any pain in the morning?” Until last year, the answer was always no.
But then, my medication, which had worked for so long, failed. I started to get psoriasis spots again, and even more worrying to me, I was feeling a lot of stiffness, swelling and pain in my hands, and occasionally in my feet when I woke up each morning. It reached the point where I sometimes couldn’t open and close my hands: I had to spend a lot of time in the morning stretching them out before I could pick up the coffee pot to make coffee.
I happened to be between insurance carriers when I first felt the symptoms. After three uninsured months, I finally went to the doctor, who was upset with me for not coming in sooner. Even though there is no definitive test for PsA, my doctor gave me an official diagnosis based on my symptoms.
There are some people who have PsA that do not exhibit symptoms of psoriasis, but myPsA symptoms tend to flare at the same time as my psoriasis symptoms. For me, my hands are impacted the most, but it can impact almost any part of your body.
I try to be very careful about management. With two young daughters, ages five and six, mobility matters. It’s important I’m still able to run around the playground with them. Every time I feel an unfamiliar twinge or something starts to hurt, I start to panic a little. I think: “Am I getting it in my arms, shoulders, hips or feet? What if I can’t be the active parent I want and need to be?”
Treatment can vary widely based on how much pain, stiffness and swelling each person has. But, so far, treating my PsA with medication and taking care of myself by eating nutritious food has helped me manage. Both my psoriasis and PsA are triggered by stress, and my diet. If I’m eating a lot of sugar or junk food, my body lets me know. Eating well doesn’t come naturally to me: I grew up on packaged food with a lot of sugar. I have to carefully consider what foods are going to inflame my joints.
As of right now, my daughters don’t show signs of psoriasis. I hope they don’t get it, and I hope their children don’t get it. My PsA appears fairly mild now, but sometimes I worry about the future. Am I going to be mobile? Will I be able to take care of my daughters? Will I be able to take care of myself?
Looking back, I realize psoriasis helped me build a more solid sense of self-esteem and confidence at a critical time in my life. As a teenager, I had to learn to build self-worth that wasn’t based on appearance. And that solid self-worth turned me into what I am today: a woman strong enough to cope with the next challenge life brings.
This resource was created with support from Bristol Myers Squibb