My psoriasis symptoms started before I even turned 10 years old. Once I hit puberty, it really started to blow up — and it was difficult to deal with psoriasis during such a formative time.
I had skin lesions all over my body. At one point, I was more than 60 percent covered. Even though the lesions weren’t contagious, they were painful, awkward, and strange-looking. I left scales everywhere, and I itched all the time. It was tricky. The teen years are a time in your life when you’re trying to figure out who you are and who you want to be, developing your personality and interacting with other people. Adding psoriasis on top of that gave me a whole new set of challenges.
Body image is a big deal when you’re young, and with psoriasis, I just wanted so much to look like everyone else, to have this healthy skin and healthy appearance. When you’re in a group of teenagers, it's awkward to field the questions: “What’s wrong with you? What’s that on your skin?” One blessing for me was that I lived in South Central Pennsylvania, so if I didn’t feel like explaining my psoriasis, I could just tell people, “Oh, I just got into some poison ivy.” Luckily, people would just roll with it.
If I could give advice to my younger self, I would say to remember that it's what’s on the inside that matters, and to remain confident and compassionate — because that’s who you really are.
Just as I was leaving my teen years, at the age of 19, I found out I had psoriatic arthritis. I had adapted to life with psoriasis, having basically grown up with it, but the psoriatic arthritis really shook me. It was hard to hear that my joints were going to break down at a young age. I was at a point in my life when you’re supposed to be making all of these big decisions about what you want to do in the world, and with this diagnosis, I suddenly felt incredible pressure.
Time became the most important thing in the world to me. I became determined to do everything possible while I still could. In my eyes, anything I wanted to do needed to be done quickly, because time wasn’t on my side; we knew my joints were likely to degenerate rapidly. All of my life decisions felt like they needed to be kicked into overdrive.
With that pressure at my back, I aimed to accomplish as much as I could professionally in my 20s. I’m so glad I did that, because now, at age 32, the disease is moving fast. But doing so much in my 20s came with sacrifices, too. I pushed myself to the limit, taking on as many opportunities as possible and traveling all the time. I wanted to collect valuable life experiences before it was too late. But this did mean a lot of time away from my family, my friends, and my husband.
If I could go back, I would have told myself to slow down a little bit and listen to my body more. I would tell myself to not necessarily push so hard because I was living in this realm of the unknown with myself. I know now that it’s alright to slow down. It’s alright to take a vacation without being on the phone the whole time, or to just have a weekend for myself.
I met my husband when I was only 18 years old — on my 18th birthday, in fact. He got to know me when I was dealing with psoriasis, and he was amazing about it. He saw everything I dealt with daily, from dermatology visits and medications to little things like not being able to wear black because it would show skin flakes. But he always saw me, first and foremost — not just my condition.
But when I was diagnosed with psoriatic arthritis, a year into our relationship and newly engaged, he and I had to have some tough conversations. I asked him, “Is this really something you can handle long-term? Are you ready to sign up for this?” Both of us were so young, and yet here we were facing these difficult life choices. His response was amazing: He told me that my diagnosis was a part of me, and that he loved all the parts of me. We got married a year later, and I’m so thankful to have him in my life.
Chronic conditions become a massive part of relationships. When talking to others with these conditions, I always try to hammer home the message that you need to be completely honest with your partner. If you’re feeling insecure or just having a bad day with your condition, you need to communicate that to the person you’re with — they don’t know what’s going on in your head unless you tell them.
I’ve also learned how important it is to acknowledge that our loved ones who care for those of us with chronic conditions often don’t get enough credit. They may work full-time, and then they come home and take care of their spouse — which can be a full-time job in itself. It’s a lot of pressure on them. I always try to keep in mind that my husband needs to have the freedom to remove himself from that caregiving role sometimes to maintain balance in the relationship.
I do still have some psoriasis flares. Sometimes it’s seasonal; sometimes it’s stress-related. But my biggest issue now is the psoriatic arthritis. It takes such a toll on my body every day, to the point where I don’t remember what it’s like to wake up or spend the day without being in pain. My new normal is recognizing my pain, learning to understand it, and figuring out how I’m going to progress through my day with that pain by my side.
I try to set small goals for myself. I used to try to eat the whole elephant at once, but that’s not possible or reasonable. But we’re not always reasonable people — we’re motivated and we want to push through things, but we can’t. It was a turning point once I realized it wasn’t responsible to take on as many things as I was. I learned that it’s OK to adjust your expectations about what you thought your life would be like, and what you think you should accomplish. Just because other people do certain things or society expects them of you, that doesn’t mean it’s reasonable for you as an individual.
I try to live as creatively as I can, and some days I just live moment to moment, giving myself pep talks throughout the day. I’ll be sitting at my desk typing for work, feeling like my hands are going to explode, and I’ll say to myself, “Just a few more keys, Kristen. Take a break in 20 minutes. You got this.” And I get through it. That’s what works for me.
I’ve also learned the value of an amazing support system. My husband is incredible, my family’s behind me, and I have great friends that are always there. Animals have also played a huge role in helping me through each day. When I was first diagnosed, we had our first dog, and he was what got me out of bed in the morning; I knew, no matter what level of pain I was in, that dog needed to go out, he needed to be fed, and he needed to be walked. It was a reason to get up. Now, we have a much bigger family with five animals that I love dearly. We adopt senior animals, which is great because they move at my pace. They like to rest and be calm, so they don’t need me to run around with them. They are incredibly kind, nonjudgmental little beings that give me the encouragement to get through each day.
A great saying that my mom and grandmother used to say is that “normal is just a setting on the washing machine.” And it’s so true. We don’t have to live by anyone’s standards but our own. Yes, I deal with pain, but that pain reminds me I’m alive and that I’m still going — that I can keep grinding through this day and this life. I know I still have a lot to contribute and a lot of people to reach. Going through what I have with these conditions has helped mold me into the person I am today, and that process will keep happening. It’s important to remember that.