AS SOON AS the word ‘incurable’ came out of the consultant’s mouth, everything went quiet. I could see their mouth moving, but there was no sound. All I could think was that they must be wrong. That was back in Spring 2015, the day I was diagnosed with psoriasis.
Prior to that appointment, I was a ‘normal’ teenager. I was in the middle of my Leaving Cert year, focussed on my upcoming exams, hopeful I’d get the points needed to do the course I wanted, and looking forward to heading off to college that September. I recall sitting in the dining hall at after-school study one day, feeling a ridge on the back of my head and picking at it. Within a short space of time, this scaly texture had spread across my entire scalp.
Sub-consciously, whenever my hands were idle, like when I was watching television or revising, I’d pick at it. In the corner of my eye, I’d see a pile of flakes on my shoulder, quickly check to see if anyone was looking, and choose my moment to brush them off. When I’d see blood under my fingernails, I knew I’d gone too far. Eventually, I told my parents and an appointment was made to see a specialist.
Going into that clinic, I was expecting to be told that I had some sort of dry skin that could be easily rectified, not that something that seemed to have appeared overnight was here to stay.
At first, I didn’t want to admit to myself, and hid from others, how much it affected me. It was as if I was leading a double life.
During the week, I was a typical party-going college student and would do the bare minimum to keep the symptoms at bay, often roping my trusted roommate in to help me apply the treatments to the areas I couldn’t reach. At weekends, I would go home and, with the help of my parents, undergo the more intense, time-consuming treatments, which were often tougher to endure than living with the symptoms of the condition itself.
There were days when I was undergoing emollient therapy when I would look in the mirror and not recognise myself – my hair glued to my head with oils, clumps of dead skin clinging onto strands of my hair, and flakes sitting all over my clothes. Where was that girl gone that everyone considered to be so glamorous? Then, I’d head back up to Dublin, put it to the back of my mind and forget about it for another week. At least that’s what I thought I was doing, but it was always on my mind, influencing a lot of the decisions I made.
Public transport used to be very challenging for me. I had this fear that I would be standing on a bus or a Luas and someone would see my scales, not know what they were and step away from me, concerned that whatever I had was contagious. To avoid that happening, I concealed the visual signs of my psoriasis through hairstyle and clothing choices, and clever placement of accessories and makeup products.
But a day came when I couldn’t do that any longer. The build-up of scale along my hairline was so thick that it looked like a white halo around my head. It started creeping down the back of my neck, onto my face, and patches appeared on parts of my body where they never had before.
I was so afraid of someone seeing it, and viewing and treating me differently, that I became obsessed with finding a cure.
Whilst completing my Master’s, I even decided to film a documentary in which I travelled around the country testing out alternative treatments. The hope I had going into a new treatment, and the despair I felt when I didn’t see the results I wanted, was crippling. At times, it took a lot to pull myself together and mentally prepare for, and commit to, the next treatment.
It was from speaking to treatment providers from different schools of thought, and fellow psoriasis warriors during that experience, that I developed a better understanding of the condition. They helped me to start accepting it, and to manage the symptoms of it more effectively, ultimately allowing me to live a better life with it. Up until then, I was convinced there was a cure out there, but I just hadn’t found it yet.
Watching back through the footage, I realised something that angered me. By going into those situations as a member of the press, I was treated with a level of respect and provided with information on a scale I had never previously been as a patient. That’s when I decided I wanted to share the knowledge I had acquired with others, to spare them from going through what I did. I started brainstorming ways I could do that and the idea for the platform Itching To Tell You was born.
Whilst researching, I discovered a number of pages, similar to the one I now have, which helped change the way I feel about my condition. Seeing how others proudly flaunted the markings on their skin, portraying them as art, helped change how I felt about my own. Equally, hearing how openly they talked about their condition inspired me to do the same.
I still remember the first time I stepped outside the house without concealing my psoriasis. I was so nervous about how people would react, but it was how little people noticed that gave me the strength and encouragement to keep doing it. My worst nightmare, people stepping back in fear, didn’t materialise.
I’m still self-conscious of the trail of flakes I inevitably leave behind me on office chairs, on people’s couches, and public transport.
At times, I wish I had a sign around my neck explaining “I have psoriasis”. That’s why, on the days when I don’t feel as confident, I like to carry tote bags with skin-positive slogans. For me, they act as that explanation and bring me a sense of comfort.
In recent years, my fears have shifted, from people seeing the markings on my skin to what the condition is doing inside my body. I’ve finally managed to get the symptoms under control but often question am I doing enough? Enough to prevent me from developing other associated conditions, such as psoriatic arthritis.
In my darkest moments with psoriasis, I have found running. I used to love gym sessions but became too paranoid about the outline of flakes that accumulated around me during a workout. Focusing on my breathing, posture and footwork distracted me from picking, or thinking about my psoriasis, and actually made me appreciate what my body could do.
You see, I felt my body had betrayed me. So, the thought of anything hindering my ability to run freely was a massive concern. Frustratingly, whenever I’ve asked a medical professional if there’s anything that I can do to reduce my risk, the answer is always as vague as, “live a healthy, balanced lifestyle”. Personally, I’d like more specific guidance, which the findings of a new study investigating the connection between psoriasis and psoriatic arthritis will hopefully lead to.
I was at my nephew’s birthday party a few weeks ago and my sister turned around to me and asked, “Why do you still have a side fringe – no one’s had one since 2016?” I looked at her and said, “Because I don’t know who I am without it”. Now, I feel the same way about my psoriasis.
There was a time when the last thing I would have wanted was to be associated with my condition but, since starting my platform, it has become a massive part of my identity and who I am. Something I was once ashamed and embarrassed about has become a source of great pride for me. I feel a sense of duty to lend my voice to the cause and undertake the advocacy and awareness work I do for the psoriasis community.
Zoe Ryan is a journalist and campaigner. More at ItchingtoTellYou on Instagram. Researchers at UCD are currently undertaking a study of people with psoriasis to examine their risk of developing arthritis related to their psoriasis, called psoriatic arthritis. If you are over 18 years of age, and have psoriasis, but have not previously been diagnosed with psoriatic arthritis, you can find out more about taking part at www.hpos.study.
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