It’s pronounced “sore-eye-a-sis”.
In 1998, none of the cool kids at Warranwood Primary School wore their hats the right way. When the teachers weren’t looking, some didn’t wear them at all. A fearful rule follower, I always wore mine correctly and was intimidated by my peers’ carefree hat antics. Grade 3 was the year that the hat rules turned on me. Wearing one, even correctly, started to make my head feel itchy and uncomfortable. I must have told mum about it, because soon enough, her former social tennis playing partner and now family GP, Dr. Fagan, was rummaging around in my hair with his fingers and a torch. This was how I found out I have psoriasis.
Dr. Fagan is no longer around, so according to Dr. Google, “Psoriasis is a skin disease that causes a rash with itchy, scaly patches, most commonly on the knees, elbows, trunk and scalp. Psoriasis is a common, long-term (chronic) disease with no cure. It can be painful, interfere with sleep and make it hard to concentrate.”
The last thing I needed in 1998 was another reason for the bullies to scratch me. This needed to be fixed. And fast. I was already a kid who nervously picked their fingers, occasionally wet the bed and had no friends. When mum would try to discuss how she was thinking of helping me, I would avoid eye contact and mumble responses, appearing only mildly interested. But in the bathroom with the door locked and bolted, I would inspect my scalp in the mirror like a customs officer hunting for cocaine. And when I found it, disgusted, I would scratch it raw. I had so many questions. What is psoriasis? And how do you even spell it? I mainly kept these questions to myself, instead of sharing them with mum or going rogue on the family’s limited supply of dial-up internet.
At one point mum told me that they don’t know what exactly causes psoriasis, but it is thought to be an immune system problem triggered by infections, stress and cold. I can recall going red in the face, knowing that I had done this to myself, knowing that it was caused by stress. Sometimes I wonder why I was such a stressed out, anxious kid. I think it was due to the combination of growing up in quite a tense household where there was a lot of walking on eggshells, combined with the fact I’m a pretty sensitive person anyway. School was super stressful, home was super stressful, wearing my school hat 2º off perfectly straight was super stressful. My escapes were reading books and listening to Rex Hunt commentate AFL games on the radio.
Still, something had to give. On the roulette wheel of health problems, I drew the psoriasis card. Despite the fact there is no cure, mum and I had an unspoken agreement: pretend there was one. Every product that proclaimed it could treat psoriasis became an exciting possibility. Mum’s unconditional love meant I got to try all sorts of shampoos, oils and special soaps. They came from far and wide, from the chemist, from the Dandenongs, from far-away farmers’ markets.
As a teenager, mum even took me to a homeopathic clinic. This was not one of Dr. Fagan’s recommendations. I remember lying on a bench in a dark room and the “doctor” placing small amounts of various things in one hand, then testing the resistance of my opposing arm. Even as a young person who knew nothing about the world, I remember thinking the equivalent of, “WTF is this shit?” While I can laugh about it now, the main thing I take from the experience today is an appreciation for how much mum wanted to help me. It was nice that someone cared, but it didn’t do anything to help the deeper problem: how I felt about myself and my psoriasis.
To this day, I’ve never met another person who has psoriasis. I know there are people out there who have it, because Dr. Google describes it as ‘common’. The closest I came to connecting with someone who has psoriasis was 13 years ago. As my grandad got older and dementia came for him, he had a lot of dried out skin and I remember someone telling me that he now had psoriasis. I was never particularly close with my grandad, but I remember hearing that and feeling excited, thinking, “Oh! Someone just like me!” Shortly after that, he died at the age of 80. Just when I thought I’d made a friend. Ah well.
Geography-wise, most of it is throughout my hair – the hair on my head, my eyebrows and beard. Mostly all of my face has a very light dusting, although it’s not particularly visible. When I scratch my chin, an early winter’s dusting of snow will begin to fall. Sometimes my forearm might get a little spot or two during stressful times. And finally, there’s a little spot on my right eyelid and the back of my left thigh, both of which are relatively new.
Having psoriasis makes me very susceptible to sunburn. The skin on my face is already starting from a place of being quite dry. On a sunny summer’s day, when the UV rating is extreme, it burns like tissue paper. So I usually hit the town and the trails with a long-sleeved shirt and broad brimmed hat, applying sunscreen for longer walks, even in winter. I’ll take feeling uncomfortable wearing a hat over getting sunburnt any day. Sometimes when I eat too many sweets, I also get a little red in the face.
I don’t really like being touched on the face or hair. It aggravates the itchiness, the same way wearing a hat can. Sometimes my partner thinks she’s touching my face and my hair in the wrong way, but no. I gently remind her that it’s just the psoriasis.
Eventually, in my late teens, early twenties, I became tired of trying to solve the unsolvable. My grandad used to be a detective in the police force. I think he would understand. Growing up, physical ailments in my family were always something to fix. But I can’t help looking back and thinking that this was the main problem. These days, I have found acceptance of reality to be a much happier and healthier approach to most aspects of my life.
In a recent interview, New Zealand comedian Dai Henwood said that he loved his cancer and that he has a great relationship with it. If Dai can see cancer this way, then I can try to see psoriasis in this light. Finally, after years of fighting the flaky dragon, I’ve laid down my ten fingernail swords. It’s a huge relief. More relieving than any of the soaps, oils and shampoos I tried.
I’m biased, of course, but I’ll take special snowflake psoriasis any day of the week over its bastard cousins dandruff and eczema. Dandruff is too mainstream. It’s the Nickelback of dry skin conditions. As for eczema, it reminds me of babies.
One of the things I’ve come to appreciate most about it is that it tells me when I’m particularly anxious. My psoriasis was probably caused by stress and now, in a beautiful twist, it helps me manage stress.
When a new spot appears or it’s particularly itchy or dry, it’s a sign to take the foot off the pedal and slow down. Instead of “Oh great, another spot,” I take it as a gift. It’s my body’s way of telling me, “Whoa there, boy! Hold your horses! You’re only human.”
It’s nice to look in the mirror and fully appreciate the person looking back. I don’t think I looked intentionally at myself in a mirror until my late twenties. I’ve learned that it’s fun to care about how you look when you leave the house. One of my daily habits is to dress in a way that makes me feel good every day. Part of my routine before I go to meet someone is to look in the mirror and check my shoulders for white, flakey specs of skin and gently brush them off. I no longer angrily swat them away as I used to.
Despite the scratches we occasionally leave on one another, psoriasis and I are one and the same and in it together for life. I’m lucky to have it as a visible barometer I can use to measure how I’m feeling. Sometimes, accepting yourself just the way you are is the only cure. Psoriasis, warts and all.
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Art by Sierra Truong
Thanks to Hamish Bulsara, Christine Chow, Cynthia Gao and Sierra Truong for reading drafts of this.
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