My Untold Psoriasis Story That I Don’t Talk About
Last updated: February 2020
I have spoken plenty of times about getting diagnosed with psoriasis at the young age of 5. I have shared my story about being taken from school and quarantined without my parent’s knowledge. This was in 1963.
Of course, I didn’t understand at the time what was going on. When I asked my father about this later in life, his response was "You were lucky as a colored child that they took you anywhere”. He is 84. I grew up in a town where the local hospital didn’t take “colored” kids, as my father would say.
I went back to visit this hospital as a young adult, not for treatment but to ask questions. I was curious. I just wanted to know why they allowed me, a person of color, to come to that specific hospital in the first place.
My difficulty getting a diagnosis
The most extraordinary thing was the nurse who cared for me during my 3-month stay was still there. I remember her being the most caring and kindest person I had ever met. She was Caucasian. She remembered how scared I was scared and helped me feel safe. She was set to retire the year I came back to visit.
She shared with me that the hospital staff had never seen any child covered with scales on over 80% of their body and were more curious than anything. They even had to call for an outside doctor for an official diagnosis.
Psoriasis wasn't well understood when I was diagnosed
She shared things with me that I have never shared with anyone before, until now. I asked her why my parents weren’t more involved. She confirmed that given my state and obvious severe plaques, the hospital staff was concerned about abuse. She said the doctors also wanted to study my condition and to learn more.
Nothing was done to hurt me or my parents. I just couldn’t wrap my head around why they didn’t even consult my parents before putting me away for 3 months. It just happened, it was just done. I was grateful that, at least, my parents could visit me every day.
I don’t remember a whole lot, but I remember that I stopped being afraid after awhile. I do remember smelly tar medication and parts of my body under a table lamp. I still don’t get that part, unless that was the beginning of the light treatment that we use today. Personally, I remember my mother crying a lot, this made me sad.
Experiencing racial bias during my early treatment
My sister once asked me a few years ago if I felt my early treatment was due to racial bias. I honestly don’t know. Because of my age, I do feel that my parents should have been allowed to make more decisions on my behalf. I also believe they should have been consulted before my head was shaved. On the brighter side, it was during my stay, I received the proper diagnosis and treatment.
As I’ve got older and slowly begun to understand my story better I realize that yes, there could have been some racial bias in my early treatments. I could have been used as a guinea pig. The question must be asked: Would they have treated a Caucasian child this way? We just don’t know.
Diagnosis lessons learned
We are a segregated community. We should all get to know people first before passing judgment, someday prejudice will be forced to rear its ugly self in another shape or form. I’m just happy it’s not 1963 again.
The one thing that I did learn from this experience is no matter your background, always ask questions and advocate for your children.
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