Deeper than skin deep: life lessons learned from psoriasis

My skin prickles and itches as if mosquitos are crawling over my entire body. I try not to scratch and break the crimson spots and lesions that grow larger and spread further with each dreaded morning. As I inhale deeply, I close my eyes in an attempt to trick my mind into thinking that this is tolerable. “This is only temporary”, I whisper aloud. But it isn’t. The longer I try to endure, the prickling doesn’t just sustain itself, instead becoming a burn with such fury that it continues well after my nails tear across the skin. 

My recent psoriasis flare was swift and severe. Psoriasis is a chronic immune system condition where a trigger such as stress or infection prompts skin cells to multiply 10 times faster than normal. This results in the appearance of red, bumpy, and scaly skin. Psoriasis affects just 3% of the population. But of that only 2% of psoriasis sufferers have a kind called ‘guttate’ psoriasis. As an auto-immune condition, there is no cure, just acceptance, or better yet, remission. Up until a couple of months ago, my skin was smooth, healthy, and clear. I had guttate psoriasis in remission. 

Sometimes 

To find the way

We must have first

Lose the way.

- Atticus

I wasn’t necessarily excited to turn 33. To me it was a bit of a ‘meh’ age where all it meant was that I’d crept closer to 35 than 30. In an effort to find some meaning I found myself tapping “age 33 significance” into Google a couple of days out before my birthday.

The search results returned some nuggets of interest. Jesus was 33 when he was crucified and both Bruce Lee and Alexander the Great died at 33. A normal human spine has 33 vertebrae and it’s the atomic number of arsenic. I then clicked on a link to a YouTube video. The description read that turning 33 can mean a burst of energy and success for some, but the beginning of a midlife crisis for others. In hindsight, I wish I had watched the video. Unfortunately, I refuse to pay for YouTube Premium so I lost interest when the ads began and I got up and made a snack instead.

As it turns out my birthday was significant. It was the end of June and like most folks I’d had my foot flat on the accelerator since January. I work full-time in government and this year my fiancé and I launched our performance underwear business, Bare Thrills. What’s more, I was balancing these commitments with my part-time degree in Health Science. I was also still travelling and maintaining a VERY healthy social life. Looking back, I was likely already showing some signs of burnout, but I kept pushing as the nights got a little later and I rested a little less. But then I caught the flu 2 weeks before my birthday and barely months after having COVID-19.

Here is the first lesson of this essay. You can hustle, you can grind and make that bread but eventually something is going to give if you aren’t prioritising your mental and physical health. The flu may have knocked me over, but I’d already set the trip wire. 

Lesson #1 – If you don’t make time for your wellness, you will be forced to make time for your illness. 

The rain stings my face like icy needles as the grey wet morning all but deepens the chill through my body. I’m exhausted, it’s freezing, it’s raining, but it’s my birthday. My fiancé, Emily, and I are in Queenstown, NZ for a mid-week getaway to celebrate my 33rd lap around the sun, despite the sun being a no-show. But the heaviness of my flu-recovering body and the dreary weather does little to dampen my mood as we arrive at our future wedding venue for an afternoon of wedding planning, menu sampling, and wine tasting. In between the black-sesame-soy-braised carrots and the wild mushroom risotto with grana Padano and black truffle oil, I realised I had been absently itching the inside of my wrist. I rolled my sleeve slightly to reveal several reddened welts. I briefly gave thought to the shower gel, sanitiser, and moisturiser I had used in the hotel but then my glass of pinot noir was refilled and the afternoon indulgences resumed.

I was exhausted by the time we got back to the hotel and even Em was tired after the full day of indulging. What I really wanted to do was wipe off my makeup and fall face-first into bed. Instead, I dragged Em to a cocktail bar and worked my way down the cocktail list because we were in Queenstown and that was what I felt we should be doing. The next morning I had tiny rash-like bumps over my torso, forearms and even my forehead which I aptly covered in makeup. “Those dodgy hotel toiletries ingredients!”, I thought as we packed our bags to fly home to Wellington. 

Lesson #2 – Listen to what your body is trying to tell you. 

By the following day, the bumps were over my entire body and had begun to irritate and itch. The penny finally dropped that this may not be just an inconsequential reaction to shower gel. I took some photos and sent them to my sister, calling her before she’d even had a chance to see the images. “Does this look like the start of psoriasis?” I abruptly asked her as the call connected. “Oh hello to you too, hang on”, she said and checked the message I’d sent. “Aww, oh no,” she said sadly and my heart sank.

My sister knew this all too well as a guttate psoriasis warrior for many years. Samantha’s psoriasis had become so chronic that she had recently been prescribed biologic injections to specifically target and suppress parts of the immune system. This is an extreme treatment that she will now be on for the rest of her life. 

Psoriasis isn’t just a skin condition that can be treated with some creams and tablets. It is a systemic condition with no single causal factor, no cure, and no one-size-fits-all relief. I didn’t realise I’d been fighting back tears on the phone with my sister until I hung up and fell into my partner’s arms. But the tears weren’t because of some ‘rash’. I cried because I knew from that day everything was going to change in the way I had to live my life. I cried because I was afraid of the worst that was yet to come. Because I was already so overwhelmed with my responsibilities and this was the straw that broke the camel’s back. 

Lesson #3 – There is no such thing as a stress-free life. Habitual stress-relief fosters resilience in the face of true stress and adversity. 

It took four weeks to be seen by a dermatologist, four weeks of hell. My psoriasis spread like wildfire in both the figurative and literal sense with no sign of slowing. In the way wildfires generate their own weather and winds that sweep their ferocity onward, my immune system was doing the same. Stressful triggers prompted an autoimmune response in the form of my skin cells rapidly multiplying. This caused a brutal itch that was relentless throughout the night and I didn’t sleep. The sleep deprivation fuelled the fire of my immune response and the psoriasis became more severe.

My psoriasis ‘spots’ all but enlarged, eventually joining to form scarlet, marbled lesions that welted and thickened as the skin cells piled on top of each other. But the thing about skin cells is that they are short-lived and drop off as they die. So now I wasn’t just itchy, but my skin was now thick, flaky, and in some places, scaly. My body had launched an attack on an invisible foe with my self-esteem and mental health the collateral damage. 

“Guttate” comes from the latin word “gutta” meaning “drop”. Guttate psoriasis appears in small, red, scaly, teardrop shaped spots.

I’ll never be able to put into words how miserable and heartbreaking those weeks were. The psoriasis throughout my hair was flaking so visibly and heavily. The red lesions were in my ears and face and makeup made it look like I was attempting to cover a peeling sunburn. I hated wearing dark clothing. I winced at the cloud of flakes that would fall to the floor when I lifted my top. But out of it all, the worst was my hands. I lived in constant fear that someone would gesture to shake hands. This I would have to reciprocate with my pockmarked, lesioned hand that no doubt they would fear is contagious. I was anxious, embarrassed, and depressed. 

There was nothing more I could do about my external appearance (save moisturising three times a day). So, I turned inward. I will admit that much of my sadness was rooted in vanity, wishing again for my smooth, clear skin. But eventually, I came to realise that this psoriasis flare-up did not define me. It would no longer dwindle my confidence and self-worth. Wishing for my skin to clear was in no way helping. I finally found acceptance. 

Lesson #4: You are not your illness or the sum of your physical appearance. 

Through the sleepless nights, the fits of insanity as my entire body burned with the itch, the social anxiety, and the tears of shock as I looked in the mirror, my incredible fiancé was there. She also endured those sleepless nights. She was also unwavering in her love and support, even when I wouldn’t let her touch me for fear it would ignite the pain and itch. When you are ill and so focused on yourself it can be difficult to show love to others let alone yourself. But Emily showed enough love for both of us. 

I shared my psoriasis journey on Instagram and was overwhelmed by the support I received from friends and strangers. Many reached out to share their struggles with autoimmune diseases or skin conditions. Sharing my experiences was a way to both receive and give support to others. I had been shutting myself off from everyone but my partner and the moment I opened my door an inch, a flood of love and support rushed in. My friends and family had only wanted to help brighten my life in this dark time. 

Lesson #5: You are not alone.

It has now been three months and my journey is still underway. Through nutrition, lifestyle, and a small round of immune suppressants I am beginning to heal. Only you are responsible for your health. It is no one else’s job to make you rest when you are tired. No one will force you to eat healthy foods when you’re rundown. We think we are invincible until we realise we are not. We can’t afford to not take responsibility for our own health. Whether we live in the shadow of autoimmunity or not.

Lesson #6: You are responsible for your own health

These were not easy lessons to learn. While some may seem obvious, they can be forgotten in times of stress or depletion. I would love to hear from you if anything in my journey resonated with you. Comment below or reach out x