The best way to describe erythrodermic psoriasis is that it feels like your whole body is on fire.
As tough as it is to battle my disease, my lifelong struggle with psoriasis has been made even more challenging because, for so long, the medical community lacked knowledge about how psoriasis affects people of color.
I am an African-American woman in my late 50s with very dark skin. All of my life, I’ve battled plaque psoriasis — the scaly skin that itches and flakes. I’ve dealt with bouts of erythrodermic psoriasis — the excruciating feeling of fire. In my 40s, I added psoriatic arthritis to the list, and at least once, I’ve experienced guttate psoriasis — where spots covered my entire body.
As a kid, I believed I was alone in this world.
When I was a teenager, I used to go to the library to try to find pictures of someone who looked like me. I spent countless hours searching for just one photo. After months and months of searching, nothing. I believed I was alone in this world — that there was no one like me with psoriasis.
I did find some photos of Caucasian people with psoriasis, but their psoriasis never looked like mine — nowhere close. My psoriasis was always very dark and thick. They had red or pink patches of thickened skin that were covered with whitish scales, just like the articles that described what psoriasis looked like. This was not me.
In the town where I was raised, we didn’t have a physician who knew anything about psoriasis. At the age of 5, I was taken to the nearest town that had a dermatologist. When I started going to this doctor, a Caucasian male, he actually looked directly at my skin and said he knew I had psoriasis by my white silvery scales.
More Doctors, No Answers
Over the next 40 years, I went to many doctors. One doctor told me he knew I had psoriasis because it was on the back of my elbows and on the front of my knees. This was odd and very funny to me since I had psoriasis over 70 percent to 80 percent of my whole body, not just my elbows and knees.
Every doctor I went to told me a different story. Every doctor offered a different treatment.
I remember seeing a doctor who gave me a tube of cream. Now, remember, for most of my life, 70 percent to 80 percent of my body has been covered with this disease, and putting creams on me made me a wet, greasy mess — not a great look for someone who worked in the corporate world. What’s more, the tube only lasted for two days.
I saw a doctor in my early 20s who started me on an ultraviolet light treatment. It started working pretty well for my psoriasis. My dermatologist decided that he needed to keep me in the box longer because the light needed to penetrate my dark skin — his exact words.
Well, that backfired: I was burned over my entire body. I had to take a week off from work and go to a burn specialist.
Needless to say, I never went back to that doctor, but I never openly questioned authority either. I just wasn’t raised that way.
“They said I needed a doctor of color.”
When I was in my 40s, someone told me my skin was different from people who are not like me. They said I needed a doctor who knew about black skin. I believed this, mostly because I was always covered in psoriasis that never got better. At the time, my psoriatic arthritis started to get worse.
So, I set out to find a doctor of color who specialized in psoriasis. I found one. While in the care of this doctor, I developed the worst case of psoriasis ever, erythodermic psoriasis, a rare and serious condition that makes the skin surface and the body inflamed and causes intense shedding. I had severe itching and pain. I went to this doctor in tears and horrible pain. I actually thought I was going to die. I looked like something out of an alien movie.
The dermatologist looked at me and said, “I don’t know what to do for you.”
Right then and there, I knew the color of my doctor didn’t matter!
That day I made up my mind: to search out and find a good doctor who specialized in psoriasis. I did my research and found three in my area. I made appointments with them the following week.
The first dermatologist I went to took my hand and said, yep, you have psoriasis. He wrote me a prescription for cream. Remember, I am still 90 percent covered at this time and in the worst pain ever. I never went back.
The second dermatologist spent over 35 minutes with me. He examined my skin, nails, scalp and did blood work. He asked if any of my family members had psoriasis. He asked what had been happening in my life. He asked if I was under any stress, had a recent illness, and what kind of medication I was on. There was no need to see a third doctor; I was in love with him that first day. No one ever took that much time to actually find out about me.
He is Caucasian, and the best doctor ever. I have been with him for 11 years and have never looked back. This is what I learned: When it comes to finding a good doctor, color should never come into play.
But how can you find a good doctor?
You need to have a good understanding of psoriasis before your appointment. Make sure you have a list of questions to ask, such as what causes psoriasis, how do you diagnose it, what can trigger flare-ups, what are the risks of my medications, and can you treat it?
You need to educate yourself. Right now I know just as much about my psoriasis (and psoriatic arthritis) as my doctor does. And never be afraid to question authority. I wasn’t raised that way, but I’ve learned to speak up for myself and others with psoriasis and psoriatic arthritis.
“The color of your doctor doesn’t matter”
The color of your doctor doesn’t matter, but my personal opinion is that if you are a person of color that you should consider getting a biopsy if the doctor doesn’t know for sure what you have. Back in the day, when dermatologists thought that people of color didn’t get psoriasis, getting a biopsy was the only way to prove it. However, we have so many knowledgeable dermatologists today that they might just be able to examine your skin and tell if you have psoriasis.
Indeed, finding a good dermatologist is the key. Just getting the proper treatment has its benefits. When I finally found the right doctor and proper treatment, I became 90 percent clear and felt 100 percent better. Getting the proper treatment changed my life.
Unfortunately, awareness for psoriasis (and psoriatic arthritis) is low in the African American community and other communities of color. My goal is to help find more research and bring more awareness to this disease so that we can get the proper treatment that is needed.
Diane Talbert is an active advocate for psoriasis and psoriatic arthritis, and serves as Executive Director of the nonprofit Psoriasis Network Support.