Speaking Up and Speaking Out about Life with Psoriatic Arthritis
Diane Talbert stood quietly by the wall of the conference room. Her skin was completely covered—though that would have been true regardless of the temperature or venue—and even though she kept her mouth firmly shut, her eyes and ears were wide open. It was the first conference she’d ever attended about psoriasis, an autoimmune disease. It was her first time ever seeing others with the scaly, flaky, sometimes painful patches of skin that had affected virtually her entire life—and seeing people confident enough about their conditions to wear short sleeves or speak publicly. She didn’t know then that that afternoon would change her life.
“I was standing in the corner, like I always did— like a little scared rat!— when the president of the National Psoriasis Foundation, she just walked up to me out of nowhere,” Diane recalled. Unknown to her then, the woman had heard her story. “And she goes, ‘Diane, you have a voice, and you need to use it.’ That was all it took. From that moment on, I could not shut up!”
Looking around her, she finally felt like she didn’t have to hide.
Growing up a guinea pig with alligator skin
Diane grew up “dirt poor” in the 1960s. After her psoriasis started at age 5, she qualified through government programs to see doctors about her psoriasis fairly frequently. But she felt more like a guinea pig than a patient. There was always another test and cream to try, but her psoriasis still covered most of her body—it was never actually controlled or eliminated.
When she went to the library to try to educate herself about the disease, Diane opened the encyclopedia to find “there were no people of color with psoriasis in there at all,” she said. “They’d describe psoriasis as ‘white flaky skin,’ and I’d look down and think, my psoriasis is a dark purplish color! There’s nothing white about it!”
Psoriasis can look very different on dark skin, and people of color are more frequently mis- or underdiagnosed with the disease, even though their psoriasis is often more severe.
As she got older she became more self-conscious about her condition: hearing peers mock her “alligator skin” killed what little confidence she could muster.
New questions, useless answers
Things got worse in her mid-20s when she experienced the first flares of psoriatic arthritis, a form of inflammatory arthritis. Of course, at first, Diane didn’t know what it was. She had the sore, stiff, and swollen joints that are the common symptoms of the disease. When she went to the doctor she was told “you’re too young to have arthritis” for the first, but not last, time.
She grew familiar with other unhelpful phrases too: “The pain’s all in your head.” “Just take an aspirin.” “I really don’t know what I can do for you.” Even: “Black people can’t get psoriasis.”
Searching for answers as a woman of color in pain
“Somebody asked me a question not too long ago: do you think [it took so long for you to get diagnosed and effectively treated] because you’re a woman, or because you’re a woman and a Black woman?” Diane recalled. “At first I said, I don’t think that had anything to do with it; I grew up in an era where we didn’t think like we think now. But now that I actually think about it? Hell yeah!”
Thinking about growing up in the ’60s and ’70s as a woman of color, and others’ stories, Diane observed that women’s health care also “should be well ahead of where it is. Some doctors, they just don’t take women seriously at all. They really don’t listen, they say ‘it’s hormones’ or just ‘you’re making it up.’”
But she wasn’t making it up, and as her pain and fatigue levels rose, previously simple tasks became exhausting ordeals. Getting ready in the morning made her so tired she was ready for bed again, and when brain fog (a symptom of psoriatic arthritis) made her blank on a speech she gave every day at her job at a mortgage bank, she started working from home.
Her social life also suffered; here, too, she heard “you’re making things up” and “just get over it,” and had to deal with people’s ignorant or snap judgments upon seeing her skin. Though she kept smiling, inside, she was dealing with depression.
Reaching out at her lowest moment
Things got worse before they got better. A sudden change in medication triggered a rare, painful, and dangerous condition called erythrodermic psoriasis: her dark skin turned fiery red and sloughed off in sheets, and her whole body shook. Even after a trip to the emergency room and strong immunosuppressant medication, she wasn’t sure she was going to live through the experience.
So she told her story online, and asked for help. Someone from the National Psoriasis Foundation saw it and invited her to that initial, important event.
“That conference changed my whole way I thought about psoriasis,” said Diane. “It changed my whole mindset, my outlook about life, period!”
Diane, who lives in Waldorf, Maryland, decided to use her newfound voice to lead a support group for other people feeling isolated by psoriasis. She ran an ad in a local paper, and over the next 10 years saw the group grow to over 150 members in the greater Washington, D.C., area.
Love in the time of psoriasis
By the time her future husband, Alvin, asked her out, Diane had been burned too many times by the insensitive reactions of potential romantic partners. “I was fed up,” says Diane. “So I said, ‘Before we get started’—and I pulled up my sleeve and showed him the scales— ‘I have a disease called psoriasis, and if you can’t handle this, you can leave now. Because I don’t have time for it. I’m tired!’” she laughs. “And he’d never even heard of it!”
But he quickly learned, and became her biggest advocate, sounding board, and support through the years. They now have two kids and six grandkids.
She managed to keep her sense of humor as she was poked, prodded, biopsied, and re-biopsied, but for decades her pain continued to worsen. It took 25 years before she was actually diagnosed with psoriatic arthritis at the age of 50. “It was like music to my ears, to finally be diagnosed with something,” she said. A new journey to find the right treatment began.
A bigger platform, a louder voice
As her network has expanded, Diane has been given opportunities to share her story more broadly. The support group she founded evolved into a nonprofit, Power Beyond Psoriasis, with a website where she focuses on advocacy and blogs.
“Sure, I’ve been through all this crazy stuff in life, but I’m living the American dream, believe it or not,” she said, listing off accomplishments: Diane has spoken in front of the Food and Drug Administration, addressed 200 doctors at the Dermatology Association, and interacts with lawmakers in Washington, D.C., every year.
She attends town hall meetings regularly, sits on advisory panels, and advises friends. “I’ve met people on Capitol Hill that people would dream of meeting! And all those opportunities are because of having this disease.”
Diane also has written for the U.S. Pain Foundation blog, Creaky Joints, The Mighty, and HealthCentral. She has been profiled in a number of publications herself, including The Huffington Post and The New York Times. She’s happy to help use her voice to educate and lift up others, precisely because she knows how hard it can be.
Diane’s struggle is nowhere near over: she’s on her eighth biologic medication and has been diagnosed with fibromyalgia. “Someone asked me recently, ‘With all you’ve been through in your life, if you could choose, would you do it again?’” Diane said. “And I said ‘Yes, because I’m able to help people on this journey.’ My grandma always used to say, you have to know why you were put on this earth. And I know my why: it was for this journey right here.”
—by Janet Jay