Originally published on xoJane and republished here with their permission.
In 2012, I lost my coverage with an incredible dermatologist and my gig waiting tables was barely covering my rent.
So – it happened to me – I stopped formally treating my psoriasis five years ago, and it’s changed my life.
Psoriasis, a chronic disease of the immune system that leads to red, scaly patches of skin, has been a huge source of body shame for me. It has covered my elbows, biceps, forearms, knees, ankles, scalp, ears, nostril, thighs, and butt cheeks since the fifth grade.
Lesions appeared a year after a pretty intense family event and never left. It has itched and chilled out, faded and spread, but has never fully cleared.
It’s not under my fingernails. It’s not internal. I don’t have Psoriatic arthritis. It doesn’t have pus or ooze and isn’t fatal, and I’m thankful for that.
But I’ve had psoriasis through my adolescence, high school, twenties, and now. People stare at it. People frown.
Strangers give me their “cures.” A lotion recommendation. A dead sea salt bath. Laying out in the sun. Or swimming in the ocean. Going to Israel.
An oatmeal bath. Wait, no – oatmeal lotion. Lotion with tar. Bag balm. Vaseline. Bikram yoga. Meditation. Aloe vera. Fish oil. Avocado. Coconut oil. Steroids. Injections! Prayer! Determination!
A boyfriend once told me my scales are beautiful, but he also blushed when a colleague stared at them for too long. I’ve gone through phases of covering up and showing them off. Jobs have required me to cover them.
A guy I dated a few years ago told me, “What’s the big deal? It’s not cancer. People have cancer.” And he’s right – people totally have cancer.
A saleswoman selling me goat milk lotion asked me to try her soap. When I told her “I have and it didn’t clear up my psoriasis,” she replied, “You just don’t have enough faith.”
I’ve gone to therapy (psoriasis is closely linked with depression and sometimes suicide). I’ve gotten EMDR (trauma therapy). I’ve tried steroid creams. UV treatment. Anti-inflammatory diets. I get acupuncture. I stay away from things like gluten, red meat, and dairy. I was vegan and gluten-free for five years. I became certified in Reiki to help with my anxiety and the itching.
In the seventh grade, I tried Neve Cambell’s spell from The Craft. I lit candles in churches even though I wasn’t Catholic.
I meditate. I practice yoga. I still have psoriasis.
I thought, Once I clear up my skin, then I’ll get more acting jobs. I thought, I’ll be able to go to the beach with those friends. I denied but also believed, I’ll be lovable.
I found excellent treatment. One of the best dermatologists in Manhattan who amazingly excepted my Medicaid. That dermatologist gave me bi-weekly UV treatments, and I sat next to models in his waiting room.
I got a part-time job at a yoga studio where I got free classes, discounted body work, meditation classes, and free, locally grown, vegan meals.
I even teamed up with an Aryuvedic doctor (I paid for out of pocket) who put me on the most intense diet of my life (no gluten, no dairy, no meat – also no beans, no nightshades, no caffeine, no sugar, no alcohol) coupled with about eight daily herbs and supplements.
Top that off with prescription lotion, body oil, soaps, and tea.
I dieted. I UV-ed. I herbed. I prayed. I blistered. I was hungry. My skin, teeth, and eyes brightened up. I still have psoriasis.
It was empowering going after treatment so aggressively. And it was absurdly exhausting. And I still couldn’t shake this overwhelming feeling of isolation and frustration.
And then it happened. My incredible dermatologist stopped accepting my Medicaid. I no longer worked at the yoga studio. It had been years since I could afford the Ayurvedic doctor. I was waiting tables at a small bar between writing and sort of acting. I was barely making rent.
And for the first time in my life, I stopped seeking formal treatment for my psoriasis.
The first week without treatment was terrifying. My psoriasis spread. My joints were tender. It was November and my scales cracked and bled. I didn’t get to sit next to the models. I got depressed and angry and overwhelmed.
And time went by. And some scales went away. And some didn’t. And learning to live with that has been my biggest challenge.
My arms and legs and ears and nose and ankles have scales. There are roughly 400,000 arms and legs and ears and noses and ankles and faces and fingernails and scalps with scales. Some people find success in clearing them, and some don’t. And that’s just the way it is.
I look down at the red scales on my arms today. They’re itchy and thin.
Letting go of the momentum of treatment terrified me. It was a regimen I’d had for two-thirds of my life. That dream of clear arms. That discipline. That belief.
But taking a deep breath, putting lotion on my body, and knowing that people are going to see my scales today has given me more peace than the twenty years of treatment.
Strangers still give me advice, and it may amuse me or mortify me or piss me off, but it’s all par for the course.
Just like the momentary mortification when someone sexy sees them for the first time. That flinching feeling when a lover kisses one for the first time. Seeing how much my skin flakes on their sheets, my clothes, my friends.
It’s all par for the course. And embracing psoriasis as part of my life has been—well—fucking awesome.
It’s hard to swallow, but there is no one cure for psoriasis. Seriously. It’s been around since (at least) 460 BC. And one of the biggest downsides of psoriasis is the isolation. The everyone-else-doesn’t-have-itchy-flaky-skin-what-the-fuck-ness. And depression. And (in some cases) suicide.
I wonder if some of this depression isn’t linked to the shame of explaining psoriasis to people who don’t have it. There are a lot of us who do this every day.
Of course I’d rather not have it, but having psoriasis has taught me a few things: It’s taught me the healing power of foods. It’s made me live my life in a way that’s committed to happiness – since psoriasis and emotions are so closely linked. It’s helped me to embrace my love of marijuana and to avoid alcohol (alcohol aggravates the scales).
And it taught me that they way I was living – or rather waiting to live my life until the day my psoriasis is gone – sucks.
And having a reasonable diet and not having to go to a doctor’s office twice a week or wrap my body in plastic wrap or get burn blisters or rub steroids on my body has been enormously healing.
Now when I feel mortified, I take a moment to breathe and remember: Who the fuck really gives a shit about scales on a body, anyhow?
This is how I am, and that’s okay.
Diana is a writer/actress living in New York City. She mostly writes plays and sometimes doodles. See more at her website. Follow her on Twitter @DeeStahl or @SurrealPsori where she tweets about psoriasis and psychedelics.
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