Living with psoriasis: “Psoriasis is much more than just a skin condition”
Rachael Martin
Health
Reading time: 4 minutes
What’s it really like living with psoriasis? Linzi Dunlevy (@wee_red_spots) shares her experiences & her journey to self-acceptance
In the UK, psoriasis affects approximately every one in 50 people. A relatively common skin condition that’s thought to also be autoimmune-related, it causes flaky patches of skin to appear (due to an increased production of skin cells), which form scales that can appear anywhere on the body.
Affecting women and men equally, there’s a good chance you or someone you know may be living with the condition. But many of us might not know what’s involved in managing the symptoms on a day-to-day basis.
To help shine a spotlight on the reality of living with psoriasis this Psoriasis Awareness Month, we spoke with Linzi Dunlevy, a Lanarkshire mum and Psoriasis IFPA ambassador. She uses her social media platform to share her daily life and experiences with guttate psoriasis (a common form of psoriasis that causes small drop-shaped sores, which usually have a fine scale) and tries to be as open and honest as possible about the struggles that it can bring, while never forgetting the power of positivity.
Read on for Linzi’s story about what it’s like to live with psoriasis, how she manages her mental health, what she wishes more people knew about the condition and how she hopes her Instagram posts can help to support others.
In 2009 small, red spots started to appear on my torso
“The first sign that something was wrong was in 2009. I’d just finished my post-graduate diploma and had begun my primary school teaching career. Small, red spots started to appear on my torso and when I booked in with my GP, I was diagnosed with dermatitis.
“Over time though, I noticed more bumps appearing on my scalp, bottom and nails, and I was eventually diagnosed with psoriasis and given steroid ointments and emollients to help reduce my symptoms.
“A particularly stressful year and a challenging class saw the spots spreading further and further down my body, until eventually 60% of my body was covered. To me, I looked like a burns victim. It was then that I was diagnosed with a different, rare form of psoriasis called pustular psoriasis, which led to me being admitted to a dermatology ward, for more than two weeks, to receive treatment. Thankfully, I have not had a recurrence of pustular psoriasis since.”
People forget that the treatments available can be incredibly taxing
“When I was hospitalised, I was put on a course of immunosuppressant drugs usually given to transplant patients, which have been proven to improve psoriasis. These are a short term solution, as they can have serious side effects, but they did help clear up my skin.
“I also used coal tar treatment, which was my least favourite but very effective. It was smelly and sticky and took ages to dry each night before bed. My pyjamas and bedding were always stained. When I was pregnant and my psoriasis returned, I did a round of phototherapy at the hospital. This involved me attending sessions three times a week for eight weeks.”
A flare-up can occur at any point
“I can be eating really well, exercising every day (I was a dancer and I’m a trained yoga teacher), getting eight hours sleep a night and drinking two litres of water every day… and I can still have a flare-up. Sometimes spots appear for no rhyme or reason. Typically though, if I’m stressed or run-down, I make poorer life choices with my diet and my sleep, and I definitely notice my skin reacting.
“There are several things I do to try to calm my body when I’m in the middle of a flare-up. I use emollients, which are moisturising treatments that help reduce water loss and lend a protective layer to my skin. I feel those with soothing ingredients work particularly well for me. It’s important to note though that what works for one person might not work for another – and I’d always recommend consulting a GP if you’re not sure what might be the best option for you.”
Psoriasis is much more than just a skin condition
“Psoriasis can affect my mood, my work, my sleep and my relationships; there’s no aspect of my life that escapes its symptoms. It can really affect my confidence and, in the past, has dictated what I can and can’t wear.
“Because it can make me feel so exhausted and miserable, there have been times where I’ve avoided social situations and stopped participating in my hobbies of dancing and amateur dramatics. At my lowest point, I avoided all mirrors and covered myself up with polo necks and jumpers, even in the height of summer, as I was so self-conscious.”
Unsolicited advice can be very frustrating
“Most people either know someone with a skin condition or have one themselves and are very sympathetic. However, people are also very quick to offer advice or a remedy, which can be frustrating – especially when you're someone who’s lived with psoriasis for a long time and has tried every known treatment available. Unless you have the condition, it can be hard to describe just how debilitating it can be.”
I remind myself to be kind and patient with myself
“Be as kind and patient to yourself as you would a best friend. Having seen my body heal in the past, and having experienced bouts of clear skin, I now remind myself that each flare-up is temporary. I try to ride each one like a wave, knowing that it will pass.
“Reaching out to the online community and knowing that you’re not suffering alone has also massively helped. It’s one of the reasons I started sharing my psoriasis journey on social media.”
You’re more than just your skin condition
“My advice to anyone suffering with psoriasis is to remember they’re more than just their skin condition. If someone is staring, use it as an opportunity to spread awareness; let them know it’s not contagious and that it’s called psoriasis, a condition that millions of people around the world have.
“Seek medical advice but also look after your mind and body. Avoid alcohol and smoking or vaping. Move your body every day and eat a healthy, balanced, colourful diet. Indulge in hobbies you love with other people who enjoy them, so you’re less likely to fixate on your skin (and any changes to it). Fill your days with joy and living life to the fullest.”
Follow Linzi @wee_red_spots.
For more support and resources, check the Boots Online Doctor Psoriasis Treatment Service* or book an appointment with a GP – they’ll be only too happy to help.
