By Diane Talbert, as told to Keri Wiginton
People often describe psoriasis as raised red patches with white, silvery scales. As a person of color, when psoriasis is active, my psoriasis is thick and purple with scales that crack and bleed. I’m itching like crazy.
I also have psoriasis which affects my joints. This is a type of inflammation that can affect the joints. I get severe fatigue, morning stiffness, swollen fingers and toes, and pain in my tendons.
So many people have said to me, ‘You have psoriasis? Isn’t that just dry skin?” We are always misunderstood with people who think like this. From family, friends and doctors.
I’m 62 now. Luckily I’m on a medication that’s helping me manage my psoriasis. But that wasn’t always the case.
When I was 5 years old, my school staff feared that my psoriasis was contagious. They sent me to the hospital on my first day. I had to stay there for 3 months. They had to see a specialist who ended up diagnosing me with psoriasis.
I don’t think most doctors in 1963 had ever seen a person of color more than 80% covered in plaques. And some doctors said I didn’t have this disease because it didn’t look like what they thought psoriasis should look like.
I learned from a young age that I must be my own best advocate. As a teenager, I began researching psoriasis. To my surprise, I never came across an image or reference to a black person. Over the next 40 years, I lost count of the doctors who didn’t know how to treat me.
In my 20’s I started getting pains in my joints and my nails started itching quite badly. This was painful because my skin became very thick and detached from the nails. My doctors said at the time it was because of my psoriasis. But they didn’t test me for arthritis.
A doctor told me I was overreacting but if the pain was that bad I should take an aspirin. They said I was too young even though you could see the swelling on my hands. Instead, they diagnosed me with anxiety and depression.
After going to numerous doctors, I found a dermatologist who advised me to go to a rheumatologist. 50-25 years after my first symptoms, I was finally diagnosed with psoriasis affecting my joints.
I started a new biological drug at the beginning of the pandemic. But I’ve been at it for 20 years. These are drugs that change the way the immune system works. They can slow down the inflammatory process and work very well in psoriasis diseases. But compared to whites, blacks in the US are less likely to receive this type of treatment.
I believe that as minorities we struggle so much more with this disease. I’ve spoken to so many people of color who have never heard of biologics. I honestly don’t think anyone will tell you about it unless you have proper insurance to pay for it. Growing up, I didn’t have good medical care, so I didn’t get the best treatment. I also think that’s why it took me longer to get a proper diagnosis.
To be honest, I didn’t understand what “health care disparities” meant when I was younger. But I remember a doctor telling me to add petroleum jelly to my medication so it lasts a full month. I had dandruff on 80% of my body and that’s all he could do for me, he said. I spent years taking treatments that didn’t work.
I think we need to talk about these injustices. Experience has shown that low-income people are treated differently in our medical system. We will be overlooked.
If you have – or think you have – psoriatic joint disease – see a rheumatologist. I have had skin involvement for more than 50 years and joint inflammation for 30 years. But I only saw my first rheumatologist about 10 years ago.
And find a dermatologist who is knowledgeable about the psoriasis condition. The one I have now is very knowledgeable. But many I’ve had in the past haven’t been.
It also helps that my dermatologist and my rheumatologist have my treatment plan on the same page.
Before you see your doctor, try keeping a journal of your symptoms. This can help steer your doctor in the right direction a little faster. You should keep an eye on things like:
And when it comes to your doctor, don’t let that put you off. As I got older, I had the opportunity to look back at how doctors treated me. They would make decisions and not include me in my treatment plan. That was a problem for me. I felt like they were telling me to be quiet.
Here are some other problematic things I’ve heard:
And my absolute favorite, which comes from a senior rheumatologist: Black people don’t get psoriasis.
My family doctor knows about my psoriasis, but that’s not why I go to her. I know that I need regular check-ups for the other medical conditions associated with psoriasis. I have:
My doctor and I have to monitor them all.
Another reason I go to my GP is because she might see something my specialists miss.
Make sure you give each new treatment a try. Even if you’re taking the right medication, it can take a few months for it to work. It’s been trial and error with treatments for me for 50 years. But so much has happened in the medical community in that time, and we now have so many effective options.
Diane Talbert, 62, found out she had psoriasis when she was 5 years old. In her 20s, she began to experience symptoms of arthritis. She is a blogger, speaker and advocate for people with psoriasis and other chronic diseases. She founded Power Beyond Psoriasis, a nonprofit group. Her #1 supporter is her husband Alvin.