My Unwanted Friend...
Last year I was invited to speak to Congress about what it’s like having psoriasis as a person of color to help push funding for psoriasis research. I was so excited about the opportunity. Unfortunately, my words were never heard because the event was snowed out and canceled. I was devastated about the lost opportunity. I would like to share with you the speech I prepared! Here is a glimpse of what life is like with psoriasis and why funding should be allocated for psoriasis research:
Psoriasis, the unwanted friend
Have you ever had a friend who was a bit awkward, annoying, misunderstood, not accepted, and just a pain to have around? And no matter what you did to make them go away, you just couldn’t get rid of them. That is exactly the relationship I have had with my psoriasis for the last 20 years. I was diagnosed with psoriasis at 7 years old, and since then the disease has covered over 90% of my body. Back then, anytime I introduced my disease to someone it became a “Guess Who’s Coming to Dinner” moment but with psoriasis. In my community where I grew up, psoriasis is not well known, misunderstood, and isn’t exactly a “black girl disease.” I remember when I brought my psoriasis with me to swim class for the first time in 5th grade. When people asked “what’s that,” I would lie and say “Its eczema.” Eczema was like that popular girl in school, most people already knew who eczema was, so there was no additional explanation needed. On the other hand, my friend psoriasis was unknown and took too much time to explain as a 10 year-old kid.
At first, I wasn’t ashamed of my skin. Psoriasis was a part of me which had always been around. It wasn’t until I noticed how uncomfortable psoriasis made other people, that I became ashamed of my friend. I can’t pinpoint exactly when it happened, but I started to hide my psoriasis. It’s kind of like that friend you had in middle school who is no longer cool once you enter into high school, so what do you do? You try your best to either get rid of them or you hide them.
Psoriasis, the friend you begin to hate
My relationship with psoriasis then moved from dislike to hate. I felt like psoriasis had ruined every aspect of my life and stopped me from doing what I wanted most. And no matter what I did to get rid of it, the hundreds of doctor visited, creams, pills, light treatments, home remedies, or prayer, my psoriasis just would not go away. But why would I hate something that had been around for so long, you would think I would be used to it by now...
Maybe it was that time my college roommate told our dorm supervisor my skin was contagious… Or it could have been that time this guy at work told me I was a pretty girl but had ugly skin. Maybe it was that moment my 9th-grade drama teacher told me she didn’t want me to use her stage makeup because she didn’t know what was on my skin, and she said this in front of the entire cast. Maybe my hate for psoriasis began during the sleepless nights I faced because my skin itched so bad, and I would scratch until I bled, so much so my pajamas would be stuck to the surface of my skin because of the dry blood. Or the time and money psoriasis took away from my grandparents who fought hard to do whatever they could to see me with clear skin, only for treatment after treatment to fail.
I remember this one time coming home for my college winter break and spending 3 out of 4 weeks of Christmas break in the hospital receiving extensive treatment in attempts to be psoriasis free. And even when my psoriasis did decide to go away, it usually left discoloration on my skin and didn’t stay gone for long.
I felt like if psoriasis remained in my life, no man would ever love and accept me fully. At other times my friend psoriasis made me feel alone and isolated because I never ran across anyone with psoriasis let alone another person of color with this disease. And even now with psoriasis more known, you don’t see psoriasis commercials with black girls like me on the screen.
Psoriasis, the friend that needs understanding
But now, as I stand before you, I’m not the same girl who hates or is ashamed of her friend psoriasis. I am one who now embraces my disease. My friend psoriasis has taught me a lot of things which are tolerance, acceptance, and compassion for things the least understood. I realize it was not that people did not accept my friend psoriasis, it’s just that they didn’t understand it. And because I was ashamed and afraid of what people would think, I neglected to really explain it or introduce my friend. But at the same time, the responsibility of explaining psoriasis should not have to fall on a 7 year old girl. I would like to get to the point with this disease that it is so talked about, that the next 5th grader who has it, will not have to lie and say it’s another disease, but can simply say “its psoriasis” and people don’t need further explanation.
There are many 125 million people in this world living with a friend named psoriasis, some of which you would never know because just like I once did, they hide it out of shame. This could be a family member, a friend, or a co-worker. There are many questions without answers that come with psoriasis. Like, why do some people get it later in life opposed to early? Or why do some people break out in certain areas, while others are covered all over… Or in my case, why is it that more Caucasians that get this disease compared to African Americans like myself? These are all questions that need answers, and we can only do that by adding psoriasis to the agenda and receiving adequate funding for psoriasis research.
How often do you experience brain fog?