When I was 15 months old, my parents noticed that my right knee was extremely swollen. I had been having some fevers, too, so they took me to see my pediatrician.
“We’ll do a blood test,” he told them, adding, “I think she’ll test positive for the ANA marker.” My doctor explained that ANA stands for “antinuclear antibodies,” an indication of an autoimmune reaction. Everyone’s immune system makes antibodies to help fight infections. But antinuclear antibodies often attack the body’s own tissues.
Sure enough, my blood test came back positive for the ANA marker. This finding, along with the swelling, helped my doctor diagnose me with juvenile rheumatoid arthritis (JRA). (Today, it’s often referred to by doctors as juvenile idiopathic arthritis.) To treat it, I had to take 16 baby aspirin pills a day, which my mom said was a nightmare.
As the name suggests, juvenile rheumatoid arthritis is arthritis of the joints that affects children 16 and under. Unlike the adult version, which lasts a lifetime, children typically outgrow JRA. That’s what happened to me.
I went to a rheumatologist who specialized in JRA, and he switched me from aspirin to a medication I had to take only twice a day. By the time I was 7, the swelling had gone, and I was weaned off the medication. My dad told me that after my last doctor’s visit, I went skipping down the hall with my red curls bouncing and a huge smile on my face; I was a big hit with the nurses.
Coping with a resurgence of pain—and new symptoms
From age 7 to 17, I didn’t have any symptoms. But when I was 18, during the start of my first year at the University of Oregon, the arthritis came back. This time, it was in my left knee. I wanted to be active and go out and do things, but I couldn’t because it was so swollen and painful. My doctor told me I had developed the adult version of JRA, rheumatoid arthritis (RA), which has no cure. I was completely devastated; it felt like I’d lost control of my body.
The first thing the doctors did was drain the fluid from my swollen knee. Then they injected it with a steroid to keep it from becoming inflamed again. Over the years, I had my knee drained about four times to relieve the discomfort. I also tried three different oral pills before transitioning to an injection medication which worked great for me at that time. My knee no longer hurt or was swollen, and I was finally able to focus on my studies (being in pain is distracting!) and stay active.
Then one day in theater class, I noticed my scalp was itching badly. I was going to regular follow-ups with my rheumatologist, so the next time I saw him, he looked at my scalp. He confirmed that the itch was caused by psoriasis and I had developed psoriatic arthritis (PsA). RA and PsA are similar, but with PsA, your immune system not only damages your joints but also attacks your skin by making too many skin cells.
Having PsA amplified my anxiety
I was hoping the itchy red blotches wouldn’t spread beyond my scalp, but they eventually did. Just in time for shorts and bikini season, they started popping up all over my legs and then spread to my middle, which was extremely uncomfortable, not to mention very embarrassing. Again, I felt so helpless.
There’s a lot of pressure facing women to look a certain way and meet certain standards of beauty, and I definitely felt that I didn’t measure up. I lacked confidence, so much so that eventually, I avoided dating and stopped going out with friends. On the rare occasions that I did go out, I was very aware of my outfit choices because I didn’t want people to judge my skin condition. Covering as much affected skin as possible was the name of the game.
Meanwhile, I tried several topical medications for the itch, which provided temporary relief. Eventually, they each stopped working, but after a while, we found one that brought it under control.
Coming to terms with my new reality
Psoriatic arthritis is as much a mental struggle as it is physical. I suffered from anxiety and depression, but over time learned to change how I felt about myself. Achieving good mental health is not a linear process; you have constant ups and downs; you just have to be patient. For me, what helps is remembering that I am a human being who is worthy of love and respect. There are things about my body that I can’t control, and that’s okay.
It’s also critical to have a strong support system. My mom is my biggest confidant and advocate. She’s a cancer survivor, and she taught me how to take charge of my health. I’ve gotten to know my body and learned to listen to it. If something doesn’t feel right, I talk to my rheumatologist. I’ve switched medications three or four times in the five years since college. You just have to keep trying to find what works best. And it’s important not to get stressed since stress can worsen flareups.
Another thing that really helps me: Helping others who have been diagnosed with psoriasis. I do this through the National Psoriasis Foundation’s One to One mentor-mentee program. I tell fellow sufferers what my mom told me: Be your own best advocate. Ask questions. Try new medications to see what works for you. Be patient.
And when you get self-conscious about the way you look and start talking negatively, ask yourself, “Would I say any of the horrible things I say to myself to my best friend?” Of course not, so why say them to yourself? Cut yourself some slack. Treat yourself with as much respect, care, patience, and love as you show your friends and family.
Today, I have hardly any scalp itching, and my whole body is clear of red patches. The medication I’m taking helps my arthritis. I’m exercising regularly, mostly brisk walking, hiking, and some brief high-intensity workouts. It’s taken me a while to get to a good place with my condition, but all the trial and error has been worth it to finally feel comfortable in my body.
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