I’m in my golden years now and I don’t think there was ever a day in my first 45 years of life that I didn’t cry or feel worthless. When I was younger I was also angry all the time, even though I didn’t show it outwardly.  It was extremely difficult living with a body covered with the scales of psoriasis; people didn’t understand and were frightened by what they saw.

I remember as a teenager wanting to hold a relative’s baby, she didn’t say no, but I could almost see terror and fear in her eyes. I was 13 at the time. I remember asking friends if I could help them cook.  They would always refuse.  I sometimes felt like people were avoiding me. I used to ride the train a lot and have lost count of the times people have moved away from me.

Sharing My Experiences of Living With Psoriasis and PsA

I was very active as a teenager. I was on the track team and even tried out to be a cheerleader.  But I gave up both because showing my skin was too much for me to bear. I would have rather died than for anyone to look at me. I was already an outcast and the idea of having a group of my peers shun me when they saw my skin made me feel utterly hopeless.

When I was in my early 20’s I went to see a psychologist because I was depressed.  It’s funny now when I think how my having psoriasis or psoriatic arthritis never entered the conversation.  Couldn’t being covered with scales my whole life make me angry and frustrated and a lack of confidence and not want to be around people?  Maybe even depressed?

When people first met me they never saw my kind heart.  I was clean, well-dressed and well-mannered. The only thing people saw were my scales. I knew what it literally felt like to be treated like a leper.

Psoriasis made me feel alone and like I was the only person on this earth.  People shunned me and I had to deal with my emotions all by myself.

But then as I got older, when people would pull away or make remarks, I didn’t shy away with hurt feelings. I would explain to them that I was not contagious and that I have had this disease my whole life. I think that educating myself and others is the key to acceptance and to one day finding a cure for us.

A snapshot from the life of a patient advocate, Diane Talbert.
I’m here when you need to talk . . . .

When I finally started getting the proper treatment to clear my skin, I still didn’t felt like I was not part of the group. I had so many psychological scars to heal. Having psoriasis brings on lots of anger, and I had a lot of anger. When I did get the courage to speak to someone about my feelings, they told me I was crying on the inside and laughing on the outside.  That was definitely me.

If you feel like your psoriasis is ruining your life and making you miserable, try to seek professional help, talk to friends, family or join a support group network. The one thing I have learned in the past few years is talking to someone helps. If you feel that you are not being heard, start a blog. This has been a life changing moment for me since I started blogging for CreakyJoints. There are things I have never spoken of in 50 years; just being able to blog has set off a light in my brain. This is part of my healing.

I feel I have so much to share with the world; remember we are not alone in this fight. One thing I have said my whole life; you will never understand my struggle unless you have walked a mile in my shoes. I know that ignorance of this disease is hard to overcome but letting them know how we feel is the first step.

Over the years I have been an active advocate for psoriasis and psoriatic arthritis, and I am now Executive Director of the nonprofit Psoriasis Network Support.  To visit the website:  https://powerbeyondpsoriasis.com/

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