Not sure why but there are two things I never want to talk about; my psoriasis and picking my nose. When I had a car growing up I would pick my nose at stop lights. When I was in high school I used to pick my nose while watching TV then press my boogers up on the bottom of my mom’s wooden coffee table. I currently pick my nose before going to bed and keep kleenex near me just in case. I use the kleenex more for boogers than cleaning up cum from sex. That’s all I have to say about picking my nose.
Which means psoriasis is what I really don’t want to talk about. But I’ve got psoriasis. It popped up on my skin at the end of the fifth grade and my family and I were convinced it was warts (which my sister got frequently) and we’d go to the doctor and burn or ice them off and that would be it. We were wrong.
My mother and I were told that I have psoriasis, the incurable chronic autoimmune disease most common with adults over 40. The doctor said I should use a heat pad over the lesions each night, rub bag balm over the heated lesions, then wrap my body in plastic wrap overnight. At ten I was already a left over. The doctor made a joke about how bag balm was not lotion for old ladies. He was not a funny doctor.
Each night I’d follow this ritual through my horror. In the summer it was unbearable. When you sweat with plastic wrapped around your skin your sweat cannot evaporate. In the morning my skin would be slimy from the sweat and the balm. My family and I used to take cross country rode trips in my father’s RV and we’d pick up my grandmother, aunt and uncle along the way each of whom snored like the marine brass marching band. I’d spend warm August nights wrapped in plastic sleeping on a three foot long couch on wheels crying from insomnia as my family played Mozart’s Symphony No. 25 in G minor through their sinuses. In the mornings I’d peel off my plastic, feel slimy, take a shower and start the day. This nightly ritual continued through high school as name calling, finger pointing and wearing pants all summer sprinkled my days.
Tired of what people were saying about me I started to wear the shortest shorts I could my Junior year of high school. I had figure skated from age four and danced ever since and had nice legs despite them being covered with white scales. Fuck them. Its hot. I’m wearing shorts now. And I started to show off my skin and buck up my self confidence. Yeah! Fuck ’em!
Since the fifth grade my skin has only been clear twice in my life; after a month in Spain when I was 23 and after a week in Chicago when I was 26. The best dermatologist I’ve ever had responded to that with “maybe you were your happiest in Spain and Chicago.”
Which brings up the next point/embarrassing thing to mention.
After doing some research it turns out people with psoriasis are seven times more susceptible to depression than others. Suicide is higher with people with psoriasis. Even higher for women.
Holy shit. Mathematically I’m more likely to drown myself in a river than to become a professional writer, have three kids, or meet the love of my life in the next five years. So yeah this has led to some late night googling/reading/treatment search.
I’ve had dozens of diets, exercises, light treatments, steroid treatments, plastic wrap treatments over the years and it was only in those moments of true inner bliss when my skin cleared up. I’ve gone to some killer dermatologists, aruvedic doctors, nutritionists, meditation teachers and yoga instructors to confront my psoriasis. Each time I begin a new regiment excited and after six months, a year, three years of constant doctor visits, large bills, difficult diets and little to no change I’d thrown my hands up in the air. I have psoriasis. That’s just part of who I am.
This is the biggest reason I never want to talk about psoriasis; its not the end of the world. Its hard but my mother has cancer and that’s harder. Psoriasis for the most part won’t kill you. But what’s been the biggest problem for me in the last five years is my hope for a solution is lost. Which sounds a lot like depression.
And for the most part my relationship with my body is great but those late childhood nights creep up when I believed that God was punishing with psoriasis. Now I know that God either doesn’t exist or is too concerned with abortion rights to punish someone with psoriasis. But at times that little voice comes in.
Last weekend I was sleeping with a guy I really like and he went to kiss my elbow and I pulled away terrified. Holy shit! He kissed my disgusting elbow! His mouth must be filled with scales and shit! A second later I was shocked. Holy shit. I still have those feelings about my body. I thought I had dealt with that but there it was. That thought as clear as lightening during a summer storm.
Strangers come up to me on the street with cures for psoriasis. Some people give me creams. One crystal healer said that my parents were not able to be appropriate spiritual guides and therefor gave me psoriasis. A nutritionist said I’ve got it because of a trauma that effected my nervous system when I was nine. My aunt promised me when I was twelve that I’d grow out of it and have clear beautiful skin by the time I was 19. I am now thirty with beautiful plaque peppered skin.
The truth is no one knows why I, or anyone, actually has psoriasis. Nor do they know how long we’ll have it or what exactly will make it go away. And this feels hopeless. But its not.
Today I’m writing this in hopes to have more of an emotional dialogue with my psoriasis along with the nutritional/physical tracks I’ve been on. To accept that it does embarrass me at times and the best thing to do to work through that is talk about it. So I have psoriasis. And sometimes that makes me feel really badly about my body.
Most of my strict regiments have ended in me jumping back into regular drinking* and a feeling of helplessness. Today my psoriasis is on my elbows, knees, forearms, ears, nostrils, ankles, and calves.
*alcohol is the number one thing for people with psoriasis to avoid — the trick is most people with psoriasis love to drink because of a deep buried low self image tremble. huzzah!!!!
The upside? It turns out that researching and treating your psoriasis lowers your depression and ups your chances of successful treatment. Research means you believe and means there’s hope somewhere inside of you. I’m writing to grab at that hope and expand it.
And there is hope. We’ve got each other. A year ago I lost my health insurance and gave up some of the best (UV) therapy I’ve ever had and my skin – though not at its worst – has flared up again. After reading this article I’ll be returning to therapy next month and am currently seeking a psychiatrist to talk about life with psoriasis. Am also interested in finding a support group or chatting with other people with psoriasis. Its a common yet uncommon disease that’s difficult but not life ending. Lets not make it life limiting either.
Below are some articles/resources I’ve found on psoriasis that are pretty great. If you’ve got some articles to read or want to talk about your experiences with psoriasis let me know. Would love to hear your thoughts and stories.
Here’s hoping, Diana