Did you know that 112% more racial and ethnic minorities live with undiagnosed psoriasis? According to a report from the National Psoriasis Foundation, our community faces more challenges with this condition. Surprisingly, 32.3% of Americans would feel uncomfortable having someone with psoriasis in their home, and 54% dating someone with psoriasis. This isn’t just a skin issue; it’s linked to a 43-58% increased risk of hypertension and severe health problems like obesity and stroke. To shed light on this, we spoke with Takieyah Mathis, a mother, artist, and psoriasis patient advocate, who shares her journey and the impact of stigma on her daily life.
BHM: Can you share your journey with psoriasis, including when you were diagnosed? How has it impacted your daily life and mental health?
Takieyah Mathis: My journey with psoriasis began in 2016. Though I likely had the disease earlier, that was the year I was first diagnosed. I feel like psoriasis impacted my daily life and my mental health because, around the time I was diagnosed, it had already affected my modeling career. It lowered my confidence, and I worried about how my hair and skin looked. I also had this pain in my foot from walking in heels. This all negatively contributed to my mental health as well because I wondered if I would ever look the same again.
I thought nobody would want to date, touch, or hang around me because I had this thing going on.
When I was diagnosed with psoriasis, that was the start of a new journey with my confidence and trying to build it back. Overall, my journey with psoriasis was long and drawn out at first, but when I got the proper medical help, I was successful with my treatments. I will say that having the right healthcare providers is critical—especially for finding the best treatments that work for you, whether you have mild psoriasis or severe psoriasis.
BHM: Have you personally experienced stigma or discrimination because of your psoriasis? How did you cope with these experiences?
Takieyah Mathis: Yes, I have experienced discrimination with my psoriasis with my employers and dating. I’ve had employers who wanted me to cover up my face with makeup, and that was disheartening because I didn’t realize what was wrong. I didn’t know my face looked so bad, which was hard to deal with.
I coped with these experiences by finding my community, finding other people who had eczema or psoriasis, and hanging around more with them. I also learned from my friends with alopecia, lupus, and other similar conditions. [Understanding more about] autoimmune diseases and the stigmas also helped because when I had my first flare-up, I didn’t know what was going on. I just knew that when people saw me, they would almost diagnose me and ask, “Hey, do you have this?” I honestly didn’t know what I had; I just knew my face was broken out.
Eventually, I started to cope with all these experiences by taking my diagnosis and speaking out about it, not wearing makeup, showing people what my scalp looked like, showing them my scars, and just being vulnerable about what I was going through. People who supported me also helped me cope because now I know a community of people just like me, and I wasn’t alone.
BHM: As a patient advocate, what are some of the most common misconceptions about psoriasis you encounter?
Takieyah Mathis: As a patient advocate, I’ll say some misconceptions about psoriasis are that we’re contagious. Also, a lot of people look at some illnesses as a disability, almost as a crutch that they’ll have to deal with for the rest of their lives. I would also say that because people can’t see where you’re flared up all the time, they think that you’re not going through something with your psoriasis.
Another stigma is that many people believe that psoriasis is just one thing, just a skin rash, versus realizing it’s a whole system of things going on and that there are different types of psoriasis.
BHM: Has your experience with psoriasis influenced your work as an artist?
Takieyah Mathis: I feel psoriasis has influenced my work in a way that, at first, I panicked. Then later, I thought, “I’ve watched years of America’s Next Top Model and Winnie Harlow, so why did I panic? I’ve already been doing this for so long. Why did I go into this shell?”
At that point, I should be using this to my advantage, still being the model I am, and finding my way to embrace it as I’ve always embraced my modeling structure.
I’ve gotten back into modeling full time versus before, when I was just behind the scenes, becoming a stage director of many events. However, being a stage director also helped me because I realized there were so many other people like me behind the scenes. After all, they’re afraid of what their skin looks like or how they feel. I’ve met so many people in the last year who are behind the scenes, producing a show, and they have psoriasis, or they have rheumatoid arthritis or lupus or something along those lines. So, I think that’s influenced me enough to learn more about everybody’s story and why they do the things they do.
BHM: What role do support systems, such as family, friends, and patient communities, play in your journey with psoriasis?
Takieyah Mathis: I feel like everyone around me, including family, friends, and patient communities, has played a role in a way that makes me never want to give up. I just wanted to push forward a little bit. I know it’s hard to carry the torch sometimes or be the leader because you get drained and always have to play that role. However, other people can motivate you to keep going because some people don’t know how to be a voice for themselves. When people tell me that they’re proud of me and, “Oh, I know I can’t do it. So, I’m very proud she can do it for us.” That’s what keeps me going. That’s what the other patient communities and similar things do for me.
BHM: What advice would you give to others newly diagnosed with psoriasis, especially those in underserved communities who may face additional barriers to diagnosis and treatment?
Takieyah Mathis: The advice I would give to others who are newly diagnosed would be to find out or study your triggers.
For example, what do you think is making your psoriasis flare up? I would also say to find the best care and healthcare provider so you can find things that are for you and within your budget. This way, you’re not causing a flare-up because you’re stressing about finances, and stress is the number one factor with psoriasis.
As Takieyah shared, “Education would be the main change I would like to see. I want people to learn about what psoriasis is so that we don’t have so many people afraid to date people with psoriasis.”
Her words remind us that understanding and awareness are the keys to breaking down stigmas. By educating ourselves and others, we can create space for respect and acceptance in dating, friendships, and everyday interactions, appreciating the diversity that makes each of us who we are.