Psoriasis is the debilitating chronic illness no one talks about. So I'm talking about it.

This piece was originally published in 2019 and has since been updated.

So today is World Psoriasis Day. For anyone who suffers from it, we know we don’t need a day for awareness. We’re very aware of it.

The thing is, the world around us isn’t. And often, that’s by our own design.

Before I talk about my experience with psoriasis, I want to get a few things out of the way.

Psoriasis is a genetic, systemic autoimmune disease that affects 1.6 million people in this country. Worldwide, a staggering 125 million people are affected by it – which, broken down, works out to be about one in 16 people. So if you think you don’t know someone with psoriasis, you’re wrong. They’ve most likely hidden it from you.

The disease causes the overproduction of skin cells, leading to painful rash-like lesions that present in different parts of the body – commonly, it affects the joints, limbs, trunk and scalp, but for many people, it can cover the whole body – it does not discriminate.

And no, you can not catch it.

I was one of those eczema kids, always with a rash of some sort and my parents trying desperately to stop me itching. I might have been predisposed to psoriasis, but I’ve still never discovered the genetic link in my family.

I was 18 when I was formally diagnosed. I had just moved away to college in Bathurst to study journalism and was on my own for the first time. I relished those first few months of independence, made heaps of friends and drank to excess.

The brutal Bathurst winter kicked in around the time our exams were taking place. Ever-studious, I bunkered down in the library to prepare for my tests. Without someone to police me or provide healthier meals, I wasn’t eating well or taking care of myself. I was sort of half-existing on a diet of canteen potato bake, lollies and cereal. In that time, I got the worst tonsillitis of my life (the doctor called it "acute raging tonsillitis" - hot). I could barely speak or swallow.

Then it started. A rash of tiny red dots, each slightly raised, had popped up on my chest. They were itchy, and when I scratched, they bled.

As I studied late into the night, coughing and fuelling myself with caffeine and sugar, my stress levels rose. I got itchier.

The rash quickly spread from my chest to my back, down my thighs and up my chin. When it started making its way onto my face, I knew something was very wrong. I thought I had some terrible, unsightly STD.

I called my mum and explained the symptoms. She’s a pharmacist, and suspected it may be a fungal rash. Topical creams should be able to treat it, she suggested. So I went to the university nurse.

After a few minutes assessing the rash, the nurse took a deep breath and looked me in the eyes. “Oh darling,” she said, “I’m so sorry.” She explained that I most probably had psoriasis, a condition I had never heard of.

I don’t remember much more of our conversation, except for her telling me that there wasn’t a cure, saying sorry a lot and that it would be “hard for me.” Strep throat and stress were the likely suspects for my first flare-up, and it wouldn’t be my last.

Now, this isn’t a sob story. I know I’m very lucky, luckier than most. I live a privileged life and I otherwise have my health. But at the time, it felt like a death sentence.

That night, alone in my dorm room, I cried my eyes out, feeling like a freak. I turned to Google (here’s a hot tip, don’t Google ‘psoriasis’ if you’re not prepared to see a whole lot of really hectic psoriasis) and assumed the confronting images before me were what awaited me: red, scaly patches of peeling skin covering every perceivable part of the body.

I decided to go home for uni holidays and, admittedly, get some comfort from my mum.

When she saw me, the shock registered. I took off my clothes and showed her the rash. It was the first time I’d been almost nude in front of my mum since I was a kid.

Being the pragmatic woman she is, she started looking for treatments. We found a local place that offered UV light therapy and booked me in for some sessions. The best way to describe light therapy is like a tanning bed standing up. It exposes you to strong UV light, which can help reduce the plaques. I have guttate psoriasis, which forms inconsistent little dots rather than random bigger patches, so I needed to expose my entire body to the light.

First, you sign a waiver that says you acknowledge the increased risk of melanoma associated with the therapy. Problematic in itself, but when you’re in the midst of a psoriasis flare-up, you’ll do anything to try and fix it.

Then, you strip completely naked and climb into the chamber. You put goggles over your eyes and the heat is turned on for incremental amounts of time, up to about two minutes. It feels like extreme sunshine is hitting you (quite nice, actually).

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A post shared by TAMARA (@_tamaradavis_) on Aug 11, 2018 at 3:32pm PDT

I had three sessions a week for five weeks. I left the clinic with a solid tan.

I also turned to a common treatment for my scalp psoriasis, coal tar shampoo. It sounds (and smells) exactly like what it is: tar you put on your hair.

Then I was prescribed a steroid ointment to put on the individual plaques. There were hundreds, and I had to do this nightly, so it was time-consuming and depressing. And sticky.

But through a combination of the above, my rash went into remission. It felt like a miracle.

For a few years, I had the odd spot return during times of stress, but no major flare-ups. I felt cured.

But then I moved to Melbourne on my own in pursuit of a new job. It was June, the start of winter, and I got run down again, compounded with the stress of my new role. The itch started. I tried desperately not to acknowledge it, hoping that would keep it at bay.

In the midst of my training, I would run to the bathroom, flip my hair over my head, scratch for five minutes and calmly return to my desk. Again, the steroid cream helped stave it off, but it’s not a cure – the fun thing about those creams is, your body builds up a tolerance, so they only work for so long.

The next flare-up happened while I was helping plan my sister’s wedding as her maid of honour. It really was an honour, and I didn’t even realise how much pressure I was feeling until I broke out again. This time, it was much more severe. I’d also started seeing a new guy I really liked – talk about bad timing.

It was summer, so days at the beach were my safe haven. Sunshine can be one of the best natural solutions for psoriasis – it has a calming effect, and helps some people with their healing.

At first, I didn’t tell my boyfriend what it was. I pretended I had a random rash and brushed it off. But as it crept over my body, he became rightfully concerned.

Eventually, I had to tell him. He hugged me and rocked me in his arms as I cried.

“I never wanted you to see this,” I said through tears, feeling the most vulnerable I ever have. “It’s ok if you want to go. I understand.”

Then he said the words I’ll never forget: “I love you un-skin-conditionally.”

At that point, I knew he was a keeper, and now we're married.

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A post shared by TAMARA DAVIS (@_tamaradavis_) on Jun 27, 2019 at 5:25pm PDT

It’s also been a few years yeas since I had a major flare-up, which might have something to do with being so content. I do still have the itchy scalp and the occasional spot, brought on by stress or when my immune system is down. Isn’t it funny how we can detect such obvious correlations between mental stress and physical symptoms? How our bodies try to protect us.

Psoriasis is your body perceiving a threat or injury and creating extra skin cells to assist. So I really can’t blame my body – it’s my mind that did this.

These days, I’m often told how calm I am under pressure. The truth is, I had to work at that. I do a lot of yoga and I live in by the beach. I physically and mentally remove myself from stressful or anxiety-inducing situations.