Touch is a big deal. You feel temperature, texture, even love through touch.
How do you touch or be touched when you have psoriasis. I wish I knew. I wish I had someone who was willing to touch me. Who could see me. Who saw beyond the psoriasis. Who could tell me. I wish I could approach the world with intact skin.
I have psoriasis. It claims territory on my body. At times it marches across my body like an invading horde(arms, legs, feet, back, hands). Other times it retreats quietly to small spaces(elbows, knees).
Today it is an occupying army. It has been many months since the latest flare has swept across my body. The redness, scaling, open areas, pain and itching(OMG the pain and itching) travel with me every minute of the day.
Today, I am wearing plastic gloves everyday, white fingerless gloves over those when I go out. I wear long pants and long sleeves. But sometimes, I throw caution to the wind to wear short sleeves! As if the gloves don’t repel enough people, seeing the psoriasis on my arms makes them wrinkle their faces and either stare or turn away in disgust. Children point and ask their parents loud questions.
How do you approach the world. Are you able to touch and be touched. Are you able to shake hands with a potential employer or hold hands on a first date?
Am I being too touchy? Is this shame or something else?
Lets go clinical for a moment.
Wikipedia has something to say about it. “Psoriasis is a long-lasting autoimmune disease which is characterized by patches of abnormal skin. These skin patches are typically red, itchy, and scaly. They may vary in severity from small and localized to complete body coverage. Injury to the skin can trigger psoriatic skin changes at that spot, which is known as Koebner phenomenon.” Read more about it – WARNING: there is a picture and it is not pretty, if you are squeamish don’t follow the link. On another note the pattern of distribution is very similar to mine -oops sorry about not warning of TMI. Also it gets a bit clinical, but it has good info.
back to it then.
For someone with psoriasis, the use of and search for treatments, lotions and meds is an ongoing quest. What works, what doesn’t. This quest has been part of my life for 11 years now. Yet, with a flare, the search becomes more frequent, more desperate. I frantically renew my search every time the march begins and breathe a sigh of relief as I pretend it wont happen again, when Psoriasis retreats.
I have lost employment due to not being able to work during times of intense flares. I have become disabled to the point of not being able to dress myself, wear shoes or even walk – having to crawl during flares.
Yes I have applied for disability. I have been turned down twice, the third time I lost my housing and you can’t apply without an address. When I was turned down before, my hands were clear. Now, not so much. The unpredictable nature of psoriasis flares makes disability determination difficult. A flare may almost totally incapacitate for 6 months or 36 months, but then go into remission for 10 years only to return with a vengeance for years.
My last determination(rejection), determined I could do a desk job – it was written rather insultingly. Suggesting I return to another job I left in another state – which was not an option, and even if it were, not one I could afford. Here’s more from that helpful agency….
Right now the flare is….*knock on wood…*whispers “retreating”.
My hands are still not ready to face the world without plastic gloves. If you were an employer, would you hire someone who wore plastic gloves to an interview. After all the law dictates type of questions they can ask, but not how they feel or respond to what they see…should I say what it is? How much educating about psoriasis is polite? Will they find an excuse not to hire? **if you are an employer with psoriasis – please hire qualified candidates who have psoriasis, especially visible psoriasis!
Dating is not something I have done in so long, I don’t really know how it works anymore. I tried, but he got a rather icky expression when he saw the psoriasis on my arms(before flare on hands). He seemed willing to overlook the fact I could barely walk because of the flare on my feet, yet when it became “real”, as in he could really see it-he changed his mind. It was an extremely awkward short date that ended tersely(on his part) and with a vow from me never to try that again. Since then I have structured life to be alone. Not lonely, just alone.
However, there are those times, human touch and companionship would be wonderful. Very welcome. But alas, not to be.
So how do you touch? How does psoriasis touch you? How does the world see you?
Leave a comment and let me know. Let’s not be touchy about it.
Gloves………….maybe I should try these