Psoriasis Disparities, Choose Your Words Carefully

There’s an old saying that goes; it not what people call you; it what you answer too. There are millions of people living with different diseases around the world. We must be careful with how we say things that come out of our mouths.

What does healthcare disparity mean?

I know what an insult sounds like. I don't need someone to offend me and proceed to turn around with the words "no harm intended." The word disparities came to me. An inequality that happens when you feel insulted and offended by the words of another person.

It all started with psoriasis

I was diagnosed with psoriasis in 1963. I am a woman of color who only saw Caucasian doctors. I was covered from head to toe in plaques. I consistently wore long sleeves and pants in 100-degree weather. People didn’t want to touch me let alone ask how I was doing.

I was depressed and cried for years. When I got my job with great benefits, I was able to get help for my mental health. It took me about 20 years to get here. I don’t think anyone ever put together what I was mentally going through.

How psoriasis impacted my healthcare

Growing up poor, I had limited access to health care. Though I was never denied health care, I’m sure I wasn’t given the best medication or treatments. I did get to see doctors for free until I was able to work and have my own insurance. Let’s look at the bright side of this: I was able to get a tube of cream every month for free for 15 or more years of my life to cover 70% of my body.

I was very grateful for what was given to me. Though when I told doctors this was not enough medicine, they told me to put lotion on my skin first to see if the cream would go further. The told me if I was having pain to take aspirin. Was this a disparity or was I being discriminated against? I feel strongly in saying it’s a disparity.

Lack of psoriasis healthcare resources

There was such a lack of resources for people of color with psoriasis that I don’t think doctors knew how to treat the condition on different skin types. My psoriasis didn’t fit the definition of raised areas of inflamed skin covered with silvery-white scaly found on the elbows, knees, scalp, and back. My psoriasis was over 70 to 80% of my body in dark thick patches.

I remember a doctor giving me a light treatment with instruction that because my skin was darker, I needed to stay in the lightbox longer. Of course, I became sunburnt because of this. He wasn’t being vicious or mean. He truly did not know how to treat my skin.

All my doctors would say "You have the worst case of psoriasis I have ever seen!" What does that mean? There is so much lack of knowledge.

How healthcare disparities can influence psoriasis treatment

We face so many disparities in life that can create a delay in treatment. It took me over 20 years to get the proper diagnosis for psoriatic arthritis. Even though I had been seeing doctors my whole life. I believe that my doctors just didn’t get it.

When you have psoriatic arthritis, the pain involves so many joints and can range from mild to severe. Although there’s no cure for psoriatic arthritis, you can control the inflammation. Inflammation causes severe pain and can lead to permanent joint damage.

The importance of understanding healthcare disparities

For people of color and other minorities in the United States, health disparities can mean earlier deaths along with a decreased quality of life and loss of economic opportunities. Of course, education, employment, and income play big into this along with lifestyle behaviors.

It is 2020 and I still believe we need to identify and understand disparities between different cultures for the treatment of psoriasis. I’m my own best advocate. I will continue to share my story and lobby on Capitol Hill.

I have spoken in front of the FDA before and I attend town hall meetings. Stay positive, learn as much as you can about your disease, share your knowledge, go on social media, volunteer, attend advocacy events. We need to be more involved.