Apart from my physical illness, I also struggle with mental illness. The ones easiest to guess are depression and anxiety, but those don’t affect my functioning nearly as much as one I’ve had for 17 years and counting: excoriation disorder.
When I first got it bad, I was in 5th grade, age 10. I’d had it before then in the form of scratching at my scalp until it bled, but in 5th grade it turned to the more recognizable skin picking people see with excoriation disorder, a.k.a dermatillomania. I had acne, which meant I was scratching and picking at pimples, but I was also picking at spots that weren’t anything except itchy. I grew up learning to wear bandanas, hats, and makeup regularly. I never failed to put something on to hide my wounds and scars.
My days, weeks, months, and years looked like this: wake-up, shower, peel at dried and healing skin, put makeup on, walk out the door nearly in tears saying “I’m ugly”, wishing I knew why I couldn’t help but do this awful thing to myself, then come home from school and go straight to a mirror to pick, wash my face, and curl up in front of a video game.
I missed out on a lot of fun things because I was scared they would cause me to have to show my skin. Swimming, summer camp, sleep overs, late nights with friends after I’d spent hours in front of a mirror and looked too awful to want to go out.
I tried everything. Covering mirrors, warm washcloths to aid in healing, acne creams, keeping busy, all of them failed. The things that did work the best were the warm cloths and staying so busy I didn’t have a chance to pick. Some days I would have to accept that I was going to look “not-my-best”, and that it was okay because I was going to heal. There were a lot of tears, a lot of lost friendships, and a lot of frustrated days with my parents just wanting me to be better.
When I was 10, dermatillomania wasn’t even a diagnosable disorder. When I was in my teens, the APA decided it was a thing, and that it had its own classification among other conditions like trichotillomania (hair pulling), which were grouped together due to their dual nature: a mix between cardinal behaviors of addiction, and those of obsessive compulsive disorder. When I started college, they then called it excoriation disorder. It had a name. I had an answer. I had something to fight, something to treat, something to see a doctor about.
Sadly, there’s not much to be done. Similarly to addiction and OCD, excoriation disorder varies in cause, severity, and form of treatment. Sometimes, there isn’t an effective treatment and you just have to work through it day by day. Some people find behavioral therapy helps, or counseling to assist with the root cause (if there is one besides brain chemistry), for some it’s a matter of removing yourself from the temptation. Many people avoid mirrors, or being alone for too long. For myself, therapy was a failure.
Maybe they should start an AA for skin pickers. Maybe it’d help to get a coin for a year, and pats on the back each month you go without destroying your face, arms, legs, and back. It feels like a constant battle because it is. I’ve spent every day, for 17 years, fighting my brain’s constant desire to pick at my skin until it bleeds.
It’s not about hurting myself, it’s not about destroying my face because I hate looking at it, it’s not some obsession with blood or pain or wounds. It’s an overgrooming instinct. A desire to have clear skin, empty pores, and an even toned complexion. I would pick until I was certain all the dirt and oils clogging up my skin were gone, but it’s not a conscious decision. It’s an odd instinct, almost out of my control. If you’ve ever has the urge to scratch a mosquito bite until it bleeds, or pick at a scab or dry skin, then you have experienced that instinct. Mine, however, just happens to be out of control.
Sometimes, the best way to fight it, is to be more meticulous and methodical about my skin care. To remove instinct from the equation and have rules much like a doctor would when treating anything. I would think “blackheads and whiteheads are fair game as long as there’s no bleeding or pain” and “dry skin, okay, I can take care of that, but scabs I need to let heal” and I had a set routine of washing, moisturizing, and grooming that made me hyper-conscious of my actions and thoughts. This helped, but the minute I became tired or distracted and got lost in my thoughts, instinct would take over and I would lose two hours to “face grooming”. Which resulted in more picking just out of sheer anxiety.
This disorder comes and goes with my stress. Lately, my stress has been high and so my skin is a wreck; the skin picking is at the worst it’s been for a year and a half. There are red wounds all over my face. I would post a picture, but the fact that I’m not should tell you something: I am horribly ashamed of my skin. I know that most people would understand, seeing a picture of my face, that it’s a disorder and it’s healing. But…. my anxiety is too great and I cannot force myself to photograph it.
What I want, is to raise awareness. Awareness that this is not completely under my control and unlike an alcoholic who avoids the bottle, I cannot hide from my own skin. I want to give tips to those struggling: warm compresses, showers, and baths, can help take away the urge and soothe skin, and staying busy and among people who understand is helpful to keep your hands (or tools) off of your skin. I want to explain why sometimes, I hide away, and there’s nothing on this planet that could get me to come out, especially without makeup. The building could be on fire and I’d probably sit here putting foundation and concealer on (I wish I was joking but it’s also okay to laugh, because that image is pretty funny).
As a Spoonie, I have enough on my plate. My excoriation disorder feels as much a part of me as my heart or GI conditions, maybe more so. I am always going to fight it. I am always going to work to manage it. It’s one more thing that takes my spoons away. One more thing that affects my daily functioning and causes me to miss out. I, like anyone with chronic illness, constantly wonder what my life would’ve been like if I didn’t have excoriation disorder, but I also wouldn’t be the person I am. I wouldn’t be as understanding or compassionate, I wouldn’t know how to soothe wounds and spot severe infection. I wouldn’t know that heat works well, but a combination of heat and ice do wonders for reducing inflammation for acne as much as they do for muscular wounds. I wouldn’t know that sometimes people do want to visit friends but there are other factors in play for their decisions. I wouldn’t know how to stand tall (well, as tall as a 4’10” girl can) and confident in a room full of people and make a speech (something I’ve had to do) when I feel my least confident and my most disgusting.
I know more about the human condition than I ever would have if I did not have the illnesses I have. And I am proud of that. I am okay with being sick, if it means I can help someone else with their illness. You do not always have to receive good, to put more good out into the world. I will never regret anything, as long as my life makes me more kind and compassionate as opposed to bitter. My illnesses have taught me that I now have knowledge I did not have before, and I fully intend to use it to benefit others.
It certainly beats going home and picking at my skin, doesn’t it?