This Is What It’s Like to Have an ‘Invisible’ Autoimmune Disease
Not having visible symptoms often makes it difficult for friends and loved ones to understand how debilitating an "invisible" disease such as psoriatic arthritis can be.
Jody Quinn, 58, was diagnosed with psoriatic arthritis 13 years ago. Symptoms of the autoimmune disease appeared gradually; at first, she only experienced pain in her wrist and elbow. As a result, her friends had trouble understanding what she was going through. But by becoming her own advocate, Quinn has helped educate those close to her about the painful disease.
I was first diagnosed with psoriatic arthritis in 2003, when I was in my mid-40s. But looking back, I suspect I had the disease for about 10 years before that. It was a long road to get my diagnosis. At first, the pain was confined to my wrist and elbows, so doctors assumed I had repetitive stress injuries. They recommended modifications to my daily routine, such as using an ergonomic keyboard.
Once I was diagnosed with psoriatic arthritis, I found that many people weren’t familiar with the disease. And when people can’t see the effects of a condition, they tend to assume that it isn’t serious.
I had trouble relating to friends and family
Everyone seemed to have advice to offer. People would tell me that I could cure my psoriatic arthritis by losing weight, cutting gluten out of my diet, or making a lifestyle change. You would never say that to someone with cancer. But I still appreciated their ideas because it helped open up a dialogue.
I tend to be a very go-go-go kind of person, but once I was diagnosed, I realized I needed to take it a little easier. Even if I feel up for it, I try to limit my activities—I know a busy schedule can catch up with me, and then I might not be able to get out of bed for a day. Surprisingly, it’s been harder for my longtime friends to accept this, because they remember the old active me.
At the same time, I also try to hide some of the pain psoriatic arthritis causes me. Nobody has seen my fingernails in 13 years, since I always keep them polished so you can’t tell that they are splitting, pitting, and lifting up from the nail bed (a common symptom for psoriatic arthritis patients). Recently, my fingers have started to be affected, too. The joints on my right pointer finger and my left hand are swollen, and my baby fingers are often bruised.
Increased awareness of psoriatic arthritis has helped
In 2011, golfer Phil Mickelson shared that he’d been diagnosed with psoriatic arthritis. Soon after, celebrities like Kim Kardashian and Cyndi Lauper started speaking out about their experiences with psoriasis, a skin condition that I also have (up to 30% of psoriasis patients eventually develop psoriatic arthritis). The increased media attention helped my friends and family understand that I have a real disease that affects my daily life.
It has also been invaluable to have an understanding employer. I’m an office manager at a small, family-owned construction company. They’ve been by my side since I was first diagnosed and are very supportive when I need to take days off for treatment. I’ve even started taking Mondays off so I can use that day to get ready for the week ahead. Proper rest is so important for people with psoriatic arthritis.
I make a point to modify my activities, such as taking the elevator instead of the stairs. But even though I have to accept that I can’t do some of the things I used to love, such as workout out or going on a big vacation, I try to stay as active as possible.
How I’m helping educate others about psoriatic arthritis
Whenever I’d tell someone I have psoriatic arthritis, they often hadn’t heard of it. So I decided to volunteer as a community ambassador for the National Psoriasis Foundation, a non-profit organization that helps people with psoriasis and psoriatic arthritis. I work with healthcare professionals, legislators, media, and the general public to increase awareness about the disease.
I also organized a team called Jody’s Psore Joint Journey. We participate in a 5K race held by the National Psoriasis Foundation in Boston each year that raises money for people with psoriatic diseases.
As told to Carina Storrs