I Don't Want to Wear That!

 I am one of millions of people living with psoriasis. It has been a part of my life for over 50 years and counting. Psoriasis has had a big impact on my life. It not only has affected how I look but also had an emotional toll on me. 

Sometimes getting dressed can be a chore. Depending on what you wear, clothing can help your situation or make your symptoms worse. I have very itchy, irritated cracked dry skin that bleeds. 

What to wear?

I grew up in a household where on Sunday everybody had to go to Sunday school and Church. One of my earliest memories was having to sit on cold wooden benches and the elder mothers yelling, “sit still child, and stop scratching.”  The services would be long. They did not understand my frustration and pain at the time.

I had to wear nylon stockings which were very irritating and would stick to my skin. I was quite the young lady who was prim and proper. I would politely excuse myself and walk out of the service making my way to a private room to scratch like crazy. I was hoping that no one notice that I had left. I recall seeing the eyes of the old mothers’ staring at me. The frustration and being uncomfortable would rise up in me because I knew I could not help that my skin was on fire.  I couldn’t wait until the service was over to take these stockings off. I had to be about 9 years old and thinking who invented these things? 

I had to put on tar like medication back in the day that smelled pretty bad, that sometimes would seep through the hose. My sisters tried to be sympathetic to how I was feeling, but no one knew the private nightmare I was having daily.  I was miserable in my own skin.

What to do?

My psoriasis was always angry and painful most of my life. No one knew the torture of covering up my skin when it is already cracked and bleeding or when your clothing sticks to open skin. When I got into the corporate world, I remember it was mandatory to wear stockings. I didn’t mind it because I wanted to cover up. I remember wearing several pairs of hose at once.  Trust me; I can’t begin to tell you the agony of that period in my life. I remember a co-worker saying to me, “I loved your pantyhose with the sparkles”. I just laughed.  The "sparkles" were the flakes from my psoriasis.

Back in the day people were not as knowledgeable about this disease as they are now. I can recall where my body was 70% covered and just moving to do anything was unbearable. By the end of the day, you just want to take off everything and go to bed. Some nights were really hard and I had difficulty going to sleep but would always think, at least I don’t have to wear those uncomfortable stockings.  

I am so happy today to say that I am happy in my own skin and don’t feel the shame and embarrassment to cover up. I have learned what to wear so I don’t irritate my psoriasis. 

I made up my mind years ago not to feel sorry for myself.  I knew I had to do something to help myself. I have started a support group; attend Town Hall meetings, and go to speaking engagements. I know that one day we will find a cure for this disease or at least help to find a cure. I have educated myself enough to be able to speak to people in the medical field and other organizations about psoriasis and psoriatic arthritis.

Over the years I have been an active advocate for psoriasis and psoriatic arthritis, speaking up and out about this disease.

The one thing that I have learned is that we are not alone in this journey.

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