One woman opens up about what it's like to work, date, and plan for the future with the autoimmune disease psoriatic arthritis.
Jennifer Pellegrin, 33, found out she had psoriatic arthritis at a doctor's visit for an unrelated procedure. At first, she did not think much of the diagnosis or fully understand how it would change her life. But seeing family members cope with the disease opened her eyes to its devastating effects. Now, she finds strength by helping others and credits the autoimmune disease for helping her become the person she is today.
At first, being diagnosed with psoriatic arthritis didn’t seem so bad. But that just shows how little I knew about the disease back then.
My primary care doctor decided to test me for psoriatic arthritis when I was 24. I was considered high risk because I had the skin condition psoriasis (about 30% of psoriasis patients also develop psoriatic arthritis) for almost 10 years, and my knee was often swollen and dislocated—something I had just attributed to normal wear and tear.
But there was another reason my doctor wanted to run the test. I was overweight and planning to have gastric bypass surgery, and he thought he could make a stronger case for my insurance to cover the procedure if we could say weight loss would also help my joints. So at the time, I actually thought it could be helpful to find out that I had psoriatic arthritis, at least for insurance purposes.
Today, I have been living with this disease for about a decade. And for better or worse, psoriatic arthritis has made me who I am. Some good has come out of my diagnosis: I volunteer with the National Psoriasis Foundation as a mentor, and I love being able to talk to patients who have just been diagnosed, or give them someone to vent to if they are having a hard time living with the symptoms.
But other times, I feel like I am much too young to feel this old. Although the pain in my knee has mostly subsided, it has spread to my hands and hips. Sometimes when I am lying in bed, I feel like I'm in a vise and someone is trying to tighten it, but my body is resisting. My hip is so stiff that it can take me 15 or 20 minutes to straighten my body when I get out of the car. (I have become pretty resilient to the stares I often get in parking lots.) All this has made me wonder: As time goes on, what will this disease have in store for me?
I'm afraid of how my psoriatic arthritis will progress
My dad and my brother also have psoriatic arthritis, and it has not been easy to watch the disease take its toll on them. My dad was diagnosed about 20 years before I was, but for as long as I can remember, he walked with a limp and had a swollen ankle, so he has probably had it for much longer. His joints have started to degenerate in the last seven or eight years, and he recently had to take a medical retirement at age 59. I am definitely worried that I will one day be at that point, as well.
To make matters worse, I got divorced around the time I was diagnosed and lost my health insurance as a result. The small bakery where I work does not give employees insurance, and the cheapest plan I could get through the government health insurance marketplace was still too expensive. I am in school to become a radiology technician and I’m excited to finally get health insurance once I finish and start working in a hospital.
Until then, I am taking over-the-counter pain medications like ibuprofen and Tylenol and coal tar ointment for my psoriasis. But I am so afraid of the day that these OTC drugs stop working—I think they are already less helpful than they used to be—that I started having panic attacks. Fortunately, the psychologist I’ve been seeing through school has taught me how to breathe and give myself pep talks, and these have really helped.
I try to make the best of the situation
In many ways, I am lucky. I live in southern California, a couple hours north of San Diego, and it is almost always sunny. The warmth really seems to soothe my sore joints—I do not know how my friends with psoriatic arthritis who live in New York and northern climates do it!
I can’t imagine going through any of this without my top-notch support team: my mom; my best friend, CC; and my brother’s wife, Kelley. My mom is really incredible. She has been a rock for my dad, brother, and I. With CC, all I have to do is text her that I’m having one of those days and she responds right away with encouraging words. And Kelley is the voice of reason when I am seeing a guy who doesn’t seem worth my time. Dating with psoriatic arthritis is hard—I put myself out there, but I am also afraid that my disease will keep men from wanting to get serious.
And I try to see the best in challenges. I love my job at the bakery—I have worked there for 16 years!—but it can be difficult to use the frosting pipe with swollen knuckles. But on the bright side, I have had customers come in who also have psoriasis or psoriatic arthritis. When they find out I have it, too, they get so excited because they finally have someone to talk to about it.
As told to Carina Storrs