health

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

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 trouble 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.

The You Beauty team talk skin tags, and why you shouldn’t cut them off yourself. Post continues below.

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 hundreds of friends and drank to excess (it was college – there were frequent bar crawls and every week we had theme nights in the uni bar.)

The brutal Bathurst winter kicked in around the time our half-yearly 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, Bathurst Maccas, lollies and cereal. In that time, I got the worst tonsilitis of my life. 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 syphilis or 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.

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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 on its side. 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 nude and climb into the chamber. You put tiny 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).

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

 

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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 at a techy fashion start-up. It was June, the start of winter, and I got run down again, compounded with the stress of a fresh job. 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 lesions. I’m one of those grateful people – loved ones often call me a lizard because of how much I bask in the sun (safely, of course.)

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.”

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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 two years later we’re engaged.

 

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It’s also been two years since I had a flare-up, which might have something to do with being deliriously happy. 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? It’s fascinating 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 by the beach. I physically and mentally remove myself from stressful or anxiety-inducing situations.

 

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I also avoid gluten, lactose and abide by a pretty healthy diet, and I barely drink – those things are known triggers for me. If only uni-me had known…

And I talk about it more openly, because I’m so over being embarrassed. I thought for weeks about whether I wanted to write this story for World Psoriasis Day. Then I decided it was time. None of us who suffer with psoriasis can help it – it’s just what happens to us.

And the very worst thing about it – worse than the itch, the pain and the embarrassment – is the effect it can have on your mental state. The condition can be isolating, and it’s no surprise people with psoriasis are more likely to be diagnosed with depression and anxiety.

Due to the social stigma that exists around it, people often feel they need to retreat behind closed doors and suffer in silence. There are forums, of course – impassioned ones – but my personal experience with these is that they can be an echo chamber of the same symptoms, same sentiments, and leave me feeling worse.

The great upside to finding these communities is that they share a common sense of humour about the situation. A sort of ‘f*ck it, this is me’ attitude that I’m very into these days. I think it comes from the resilience they’ve been forced to adopt.

Ironically, we’ve all grown a thick skin.

Sadly, no matter how much we make light of it, psoriasis will never be that funny. Or sexy. It won’t be cool.

But there’s one thing about Kim Kardashian West I’m actually thankful for, and that’s her willingness to share her psoriasis with the world. When she first revealed it on an episode of Keeping Up With The Kardashians, I felt seen for the first time. I’m sure hundreds of thousands of others did too. So thanks, Kim.

 

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I’m so excited for you guys to try my new @kkwbeauty Body Collection. It consists of 3 different products (body make up, a liquid body shimmer and a loose shimmer powder). I use them all separately and sometimes all together depending on the look I am going for. This one shown above is the body Make Up. This is what I use most often. I don’t always like my legs to have shimmer on them. I use this when I want to enhance my skin tone or cover my psoriasis. I bruise easily and have veins and this has been my secret for over a decade. I’ve learned to live with and not be insecure of my psoriasis, but for days when I want to just cover it up I use this Body Makeup. My formula is so creamy and buildable and has a smooth satin finish. It builds easily for a more full coverage if needed. It launches 06.21.19 at 12pm pst at kkwbeauty.com #kkwbeauty. Stay tuned for some videos showing how i use it all.

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Other public sufferers include Cara Delevingne, LeAnn Rimes and Kris Jenner (there’s that genetic thing).

It helps to see these people speak about it in the spotlight, talking about it like it’s ok. Because many of us are so good at hiding it, a lot of our friends and loved ones aren’t even aware we’re struggling. If you looked at me today, you wouldn’t see any physical signs that I have a chronic illness. Kim Kardashian even invented a body makeup line to hide hers. Which I totally understand – part of the problem is also our only solution.

I recently met the formidable Tony Crimmins, a lifetime sufferer of heavy psoriasis who described to me how he was asked to leave a pool once because the lifeguard told him he had AIDS. Now, Tony has created the brand Ocean Breeze to formulate natural, topical treatments for psoriasis symptoms. They’ve given me some product to try, and I look forward to seeing if it works for me.

Because the thing is, on the spectrum of psoriasis, everyone has different symptoms, timelines and triggers. We all know our own, and there are certain commonalities, but no one pathway – which is why it’s so tricky to find any kind of “proven” relief.

But until we lift the stigma, people will continue to feel like I felt when I was diagnosed: completely and utterly alone.

What we really need is for people to start talking about psoriasis like it’s the flu; the way someone can openly share they suffer from migraines brought on by stress.

I’ll start: I suffer from psoriasis brought on by stress. 

And to quote fellow sufferer and actual angel Jonathan Van Ness, “Your body is fierce, it’s cute, it’s fine, and the more people that know about psoriasis, the more you’ll stop having to tell cute guys about it when you take your top off.”

For more from Tamara, follow her on Instagram.

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