5 Tips for Managing Psoriatic Arthritis, Especially If You Have Black Skin: ‘Representation Is Really Important’
Nicole Cech first noticed patches on her skin in her early teens.
She didn’t receive a diagnosis of psoriatic arthritis until she was 24. That's when she found a Black dermatologist, like her, who understood what the condition looks like on dark skin.
Nicole's tips for managing psoriasis include finding a good doctor, using discount programs, and finding balance in your life.
Nicole Cech, an artist and writer in Concord, California, isn’t sure when she had her first flare-up of psoriatic arthritis. It might have been when she got strep throat at age 7 and broke out in a full body rash. Or it might have been when she was 14 and a patch of skin on her face became itchy, flaky, and inflamed. Whenever it was, the dermatologists she saw as a child waved away her problem, telling her to just put some Vaseline on it.
Getting a correct diagnosis took Nicole another whole decade. When she was 24, her skin condition flared up again, along with other troubling symptoms. Nicole was active, running, walking long distances, and working out regularly. Then, suddenly, those activities became impossibly painful.
“Workouts that I thought were super easy for me in the past were becoming so hard I would cry midway through,” she says.
Besides joint pain and fatigue, she was losing hair and experiencing brain fog. She began a long search for the right diagnosis. Here are some tips she has for managing the condition.
1. The right doctor makes all the difference
Nicole's primary care physician directed her to a series of specialists. At first, Nicole says she felt dismissed again. They told her that her symptoms might be from dry skin or eczema, or a psychological issue, like stress.
Read more like this
Explore these related articles, suggested for readers like you.
At the time, Nicole was working in marketing at a skincare company. She spoke to doctors she worked with and did her own research. She was convinced something more serious was going on. Persisting in her search for answers, she finally saw a dermatologist who was Black like her.
“That was my turning point,” Nicole remembers. “She was like, 'Yes, this is psoriasis, like a textbook case of what it looks like on Black skin. I don't know how you could have gotten any other diagnosis.'”
Nicole's experience taught her that Black people can sometimes struggle to get skin complaints diagnosed correctly. Some conditions look different on different skin tones. And medical providers may not have as much exposure to what these problems look like on Black skin.
“I think it's just a testament to why having representation in the medical field is really important,” Nicole says.
“Having representation in the medical field is really important.”
Now, at 26, Nicole has found the right diagnosis, a treatment that works for her, and a community to support her. Her journey taught her a few more key lessons that she would share with anyone else struggling with psoriatic arthritis.
2. Don’t sleep on discount programs
The medications Nicole takes to treat her psoriatic arthritis are expensive.
She takes the biologic Enbrel to lower inflammation and pain, along with anti-inflammatory drug meloxicam. The good news is that her condition is much better, and she can once again do many of the activities she enjoys.
“Things are relatively controlled. It's definitely leaps and bounds better,” she says. “I'm functional now. I'm still in pain, but I can live my life.”
The bad news is that accessing and paying for Enbrel and other biologics has been difficult.
“For 1 month's worth, you're looking at like maybe $5,000 or something like that. It's not a joke,” she says, explaining that insurance companies hesitate to pay for them until you’ve tried all other possible medications.
Nicole’s insurance pushed her to try less expensive options, even though the biologics were working well for her. This created a mountain of paperwork for her doctors to help her get insurance approvals. It was also a huge financial problem for Nicole to pay for the medicines out of pocket while she waited for insurance authorizations. But she discovered that some biologics companies have copay programs that subsidize the cost while people wait for insurance approvals to come through.
“By getting enrolled in their program, I only paid $5 out of pocket. It was essentially a stopgap until I could get insurance,” Nicole says. “You can renew it as many times as you need to. It's just a lot more administrative work to do that.”
One big downside of these programs is that many are only available to patients with health insurance. But if you have insurance, Nicole says it's worth checking out.
“That's actually a really big piece of financial advice I'd give to anyone who's on these drugs," she says. "Make sure that you get enrolled in the programs. Because otherwise, it's incredibly expensive."
3. Balance managing your disease with living your life
Nicole’s next two pieces of advice go together: Make sure you carefully track your symptoms and stay on top of the latest treatments. But don’t let your diagnosis take over your life.
“I've described doctor's appointments as being almost like job interviews,” she says. “If you want to make sure that you're getting the treatment that's going to put you in the right place, you have to be able to accurately describe what's going on with you. And that's a lot easier said than done.”
Keeping track of your symptoms, where and when you have pain, and what medications you’ve tried is a lot of work. But Nicole says it’s essential for getting the most out of your treatment.
“A good doctor will also be tracking those things," she says. "But even the best doctor’s not living day to day with you."
4. Find a community for support
Finding a community of other people dealing with the same condition can help, too, Nicole says.
“One of the things that's really helpful is to find other people who are going through what you're going through,” she says. “I'm a part of the CreakyJoints community. What's been really amazing is that there are people of color within the community. We've been able to have conversations about, what does this look like on your skin?”
The key for Nicole is finding balance between managing her condition and enjoying life.
“You can really go down a rabbit hole and constantly be Google searching,” she cautions. “Find that balance between finding the community and relying on them as a resource, but also not letting it become every waking thought that you have. Because that is a path to becoming very burnt out not only with managing the condition, but just in life in general.”
Similarly, she tries to strike the right balance when it comes to managing her symptoms and still being able to do the things she loves. It’s a lesson she learned the hard way. When she was first diagnosed, she gave up many of her favorite activities, like kickboxing, because they could cause flare-ups.
“I ended up feeling so trapped in my body, that it just wasn't worth it,” she says. Now, she works at “figuring out what the trade-offs are where you can maybe have a little bit of pain to do something that you really love.” She has returned to occasional kickboxing. But she times her classes carefully and allows plenty of time for rest and recuperation.
5. Knowledge is power
If there is one common theme across Nicole’s experiences with psoriatic arthritis, it’s that knowledge is power.
More knowledge of what the condition looks like on different skin tones empowers doctors to help more people, she says. More knowledge about medication discount programs empowers you to save a ton of money. And more knowledge about your needs and limits empowers you to thrive with the condition.
So, if you want to live successfully with psoriatic arthritis, Nicole says, seek out people who are knowledgeable about the disease and arm yourself with as much information as possible.
Why trust our experts?
