Psoriasis is a time-stealer. With completely clear skin, how much time and energy could be regained for the important things in life? That’s something Emily from the UK knows first-hand. The 29-year-old social work student has lived with psoriasis since childhood. Now, for the first time, Emily’s skin is completely clear and she shares her story of how having completely clear skin has completely changed her life.
How my psoriasis started
I was diagnosed with psoriasis when I was just 12 years old. At that time, I was in the USA and I thought I was getting mosquito bites on my head. Within a month, I was diagnosed with guttate psoriasis. My parents didn’t want me to be hospitalized at first, the hospital only had an adult ward, that mean’t going to the hospital twice a day, every day. I had it everywhere – it was pretty awful. But it wasn’t horrendous until I was about 22.
I began UV treatment then and tried different drugs, but they didn’t work. If I was stretching my skin would crack and hurt so much. Finally, after getting out of a very stressful relationship, I had my worst flare-up. I was losing hair, eyebrows and nails, and it was the first time ever that I had psoriasis flare-ups on my palms and the bottoms of my feet. Here in the UK, doctors use the Psoriasis Area and Severity Index (PASI) score, and when the score is above 10, the patient needs inpatient treatment. My score was 18!
Luckily, my dermatologist has known me since I was a kid and we have a great relationship. Before and after my UV treatment, I used to fill out a survey about how psoriasis affected my mental health. I have PTSD (Posttraumatic stress disorder) but I was always comfortable talking about it. And I felt looked after.
However, it was a long and difficult journey to find the treatment that worked. I still remember standing naked and embarrassed having my PASI score taken again, waiting for the results to get the treatment. My dermatologist came back and gave me a hug once they were through. “Your psoriasis is bad enough,” he said, and that’s when I started the biologic treatment.
Inform others in advance
Psoriasis has had the worst effect on my dating life and relationships. How can a relationship work if you have to disappear for six weeks for a treatment, or you need to be in a hospital three times a week? On an average day, I would spend two to three hours just moisturizing or getting a treatment. You simply don’t have time for anything else, and when you do, you feel itchy, tired and sore and you just don’t feel attractive. My ex-girlfriend used to say “I wish people would stop talking about it.” This gradually turned into “I wish you would stop talking about it” I live in a small town and people would ask about my condition quite often. And sometimes psoriasis was the only thing they wanted to know about me.
I knew my psoriasis was about to flare up severely again, as it was spreading, a student had said “Ew can I catch it?” so I decided to post a little paragraph in my university Facebook group about what psoriasis was, that it’s not contagious and why I was going to be late for lectures sometimes. I have a cousin with eczema and he once had a panic attack when giving a presentation – he felt so ashamed of the severe flare-ups he had at the time. I decided to jump in and inform others in advance, instead of having people watching and talking behind my back.
Now my skin is clear!
Now I’m actively involved in volunteering and helping women and girls in immigrant communities. I never thought about psoriasis advocacy before joining PsoHappy as an ambassador, but I don’t think there’s enough awareness of psoriasis and advocacy gives you a different perspective and values. Many people still think that psoriasis is just a dry skin condition.
Since getting my biologic treatment last December, my skin has completely cleared up. Finally, I can go swimming, which I thought I would never be able to do. I was so scared to go to the pool when I was a teenager. And for the first time I can see that I have freckles on my elbows and knees. I still find myself waking up and not being able to believe this is true – it took me 17 years but now my skin is clear. My life has changed completely and I’d like to encourage others living with psoriasis – you’ll find your way too!
PsoHappy explores how psoriasis affects happiness and well-being. Make your voice heard by taking our surveys about different aspects of living with psoriasis