Living With Psoriatic Arthritis: You Don’t Have to Be a Prisoner in Your Own Body
Key takeaways:
Psoriatic arthritis is a chronic inflammatory condition that can be difficult to diagnose, because there is no single test for it.
A diagnosis helped Diane Talbert learn to manage painful symptoms.
She copes by slowing down, making adjustments, and being an advocate for her community.
For Diane Talbert, getting a psoriatic arthritis (PsA) diagnosis was a relief.
After decades of telling healthcare providers she was in pain, someone finally listened: “I was first diagnosed with psoriatic arthritis 15 years ago. I had been having symptoms of psoriatic arthritis since the age of 25, but doctors thought this was all in my head,” she says.
Since then, Diane says, she’s been able to learn how to live with the disease — and how to help others in the process.
Swollen joints, pain, and pitted fingernails
Diane also has psoriasis. (PsA is a form of arthritis that sometimes affects people with psoriasis.) When she told her healthcare providers that she was in pain, they told her it was because of her psoriasis. But then her joints started to swell, increasing her pain, and she knew something else was going on. Her nails were pitting so badly that the skin around them would thicken and lift the nails.
Nail pitting is a sign of nail psoriasis, which is common in people with psoriasis and PsA, and is a result of overproduction of skin cells. This can lead to depressions in fingernails and toenails, as well as discoloration, crumbling, and separation of nails from the nail beds.
“I was given pain pills or told to take some over-the-counter medication,” Diane says. “My pain was getting worse and worse. After numerous doctors, I found a dermatologist that told me to go to see a rheumatologist. I was finally given a diagnosis of psoriatic arthritis at the age of 50 — 25 years after having my first symptoms.”
A hidden life
Before the diagnosis, Diane says, she was living a kind of hidden life.
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“I was held prisoner in my own body for almost 30 years,” she says. “I had an illness that no one understood, and my doctors told me it was all in my head. I was young, always smiled, and showed that self-confidence on the outside. But, on the inside, I was having unbearable pain. My psychologist says I was smiling on the outside and crying on the inside.”
Getting diagnosed with PsAs was a relief, she says, because someone finally believed her instead of telling her that it was all in her head. It also helped her confront the disease’s debilitating effects and find treatment.
Learning to live with psoriatic arthritis
Living with PsA means slowing down a bit and being more deliberate in her actions, Diane says. Because of the pain in her joints, she has had to make some lifestyle changes.
“I sit down, when possible, when showering,” she says. “My husband has installed grab bars throughout the house, because I have fallen a couple of times. I have nonslip carpet.”
And it means facing her limitations, while not letting them define her. With the help of special equipment, for example, she’s able to continue to do the things she’s used to doing.
“I had to invest in a jar opener because of the pain in my hand,” she says. “Getting dressed has become a chore, so I’ve got devices that make dressing a little bit easier for me, such as clothes with zipper pulls.”
“I have grabbers all through my home and sit in a shower chair. On bad days, I order my groceries online. Step stools are my best friend.”
Perhaps more importantly, it means being patient.
“I have learned that I don’t have to do everything at once,” she says. “If I’m cleaning the house, I can clean one room a day. If I’m washing clothes, I will do one load a day. If I’m too tired to hang them up, I will wait until the next day. I still manage my everyday life despite having daily pain.”
Pain is real, even if you don’t look sick
If you’re living with PsA, support from family and friends is important, Diane says. But knowing that the disease doesn’t define you and that there are others out there like you is equally important.
“People will make you feel like you’re an outsider, but remember there are millions of us with this illness,” she says.
“You are not alone, and so many of us understand what you are going through. Don’t get upset when someone says, ‘Well, you were fine yesterday,’ or when people think you’re lazy. You have to take it one day at a time, find a good doctor, and get treated.”
Finding a voice through connection
Since her diagnosis, Diane has learned to use her voice to help others living with PsA.
“I had to learn to tell my story. Nobody knows my pain as I do,” she says.
“I want people to know that our pain is real. So many people have said to me, over the years, ‘You don’t look sick.’ With people thinking like this, we will always be so misunderstood by family, friends, and doctors.”
Once she found her voice, she was inspired to pursue advocacy on a large scale.
“My first advocacy work ever was starting a support group in my area. It took off, well beyond my belief,” she says of her first public event that encouraged her to advocate for those in her community with PsA.
“I had organizations that stepped in to help me with drinks, snacks, venues, speakers, and food … I knew from that day on that I wanted to help people and try to be a voice for them. I knew my community and understood what they wanted and what they were going through.”
Through her advocacy, she’s been able to do things that others would only dream of, she says.
Through the nonprofit that she started, Power Beyond Psoriasis, she’s spoken in front of the Food and Drug Administration, as well as at conferences and other events. If she didn’t have PsA, she says, she wouldn’t have had the opportunity to do those things.
“I have always considered myself as a little person. I don't have thousands of followers,” she says. “But I was just reminded recently that there is nothing small about me. If I'm able to reach one person, that is enough.”
“It took me many years to get control over my life and get in a positive mindset. I still have self-doubt that I'm not good enough, but this is something that I work on.”
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