Confession: I have an Autoimmune Disease
I’ve thought about writing this blog post so many times over the past three years.
I’ve sorted carefully through the words in my head, trying to figure a way to properly express the multitude of feelings that come with a psoriasis diagnosis. Even now that I’ve committed to finally talking about it, I can’t quite figure out a way to describe the shame and despair caused by a flare up.
I’ve been living with plaque psoriasis for over a decade, but it has taken me so many years to even say the words out loud to my closest friends.
Psoriasis is an autoimmune disease that causes red, scaly patches to appear on the skin – typically on the outside of the elbows, knees or scalp, but it can appear anywhere on your body. Psoriasis is believed to be a genetic disease; however researchers do not completely understand how the disease is passed through generations. About one-third of people with psoriasis report that a relative has the disease. If one parent has psoriasis, their child has about a 10 percent chance of having it. In my family, my maternal grandfather has psoriasis.
I had my first flare up about 15 years ago.
I have always had dry skin and when my scalp started feeling a bit itchy, I figured I had dandruff. I mean, I’ve seen those commercials… a little itch and white flakes on your shoulders meant you just have to pick up a bottle of special shampoo, right?
So, I used the special shampoo and that seemed to work for a while.
What I didn’t know is that unlike a normal dry skin condition, psoriasis has triggers for when it flares up. Stress is one of the most common triggers, especially for women. Inflammation is the body’s way to cope with stress and when you have psoriasis, your immune system responds to the stress by over-responding.
For me this results in the most common form of the disease, plaque psoriasis.
What may be somebody else’s dry scalp is my own private nightmare. It’s not just an itch; when I’m having a flare up it’s almost a constant uncomfortable burning and tickling sensation. It’s not just a couple dry flakes either; it’s raised red patches, covered with a silvery white buildup of dead skin cells (called scale).
Basically it’s like dry skin on crack.
Except it comes with a huge batch of emotions…
Due to this disease I have felt: shame, out-of-control, disgusting, unattractive, depressed, and as if I had a dirty secret that I could never share. I would try to time my haircuts to fall in between flare ups, because I imagined my stylist recoiling in horror if she parted my hair and saw what was lurking underneath. I wanted to appear attractive to the world, but I was forever trying to hide what almost felt like a monster trying to emerge from my own body.
I could be fine for months and then suddenly a flare up would start and last for even longer. I am very lucky and only have mild psoriasis on less than 3% of my body. Typically it is contained to my scalp, under my hair, but occasionally I will find a spot somewhere else on my skin.
When it was at its worst, I’d wear my hair in a ponytail and avoid dark-colored shirts. If flakes did break free, I was mortified. I tried so many different medications from my dermatologist and was incredibly frustrated when I couldn’t find anything that seemed to work for me.
There is no cure. There is no magical pill that fixes everyone with this disease.
Through the years, I’ve figured out what works for me. I still have flare ups, but now I have a better idea how to treat them.
I’ve started talking about it too.
I realize now that psoriasis isn’t a punishment for something I’ve done. I’m not the Beast from Beauty and the Beast, or the Hunchback of Notre Dame. My autoimmune system is just out of whack. I can manage it.
It’s taken me almost 15 years, but now it’s just a part of me.
And I can deal with it.
Source for statistics: psoriasis.org