This Is What People With Psoriasis Want You To Know

"Sometimes it feels like I’m trapped in my own body."
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There are 1.8 million people in the UK living with psoriasis, but despite its prevalence, misconceptions around the skin condition are still rife. For a start, psoriasis is not contagious.

The condition is an inflammatory skin disorder that can cause red and flaky patches of skin that are sometimes covered in silvery scales. As well as causing physical symptoms, psoriasis can lead to psychological distress and feelings of social isolation.

To end stigma and bust myths around psoriasis, we asked people with the condition what they want others to know.

“The impact the condition has on your mental wellbeing is often overlooked.”

Pete, 32, began suffering from psoriasis at the age of eight.

“I suffer with psoriasis on my face, scalp, ears, back, legs, knees, arms and elbows so hiding it from public view is at most times impossible. I often find myself being very self-conscious, covering my skin to avoid awkward looks from the scars left by the condition, which are a permanent reminder that this autoimmune disease will be with me for life.

“As we move into cooler months my anxiety levels go through the roof as I know it’s the time of the year where my psoriasis will flare up and be at its worse, the plaques will worsen and be more visible and the itch can cause me to have multiple nights without sleep.

“Psoriasis has been part of my life from about the age of eight, but I was only formally diagnosed with psoriasis three years ago when I moved GP, prior to that it was misdiagnosed as dermatitis.

“Around Christmas 2016 a new GP arrived at our doctor’s surgery and he was the first person in 23 years to ask me how the condition makes me feel, I now see him exclusively for ongoing treatment.

“Ultimately the lack of understanding from family, friends and colleagues can at times make you feel out of place and alone.”

“Psoriasis is not contagious.”

Sam Winters, 25, had his first psoriasis flare up at 19.

“When you have visible patches of psoriasis, people ask what it is (if they bother to ask at all). If they don’t know about psoriasis, quite often people are visibly disturbed which doesn’t make you feel brilliant. I’ve been asked at the gym if I should really be exposing areas affected by psoriasis in communal spaces in case I infect others.

“It definitely puts me off going into public spaces during a bad flare up. Fortunately mine tends to be on my arms, legs and scalp so can be covered, but it must be a lot harder for those who aren’t so lucky.

“You’d think people think you had leprosy or something from some reactions. Psoriasis definitely has a strong mental impact along with the physical discomfort.”

“Psoriasis is not a cosmetic issue.”

Ciena Rae Nelson, 25, began experiencing symptoms aged four.

“I think that the one thing I want people to know is that Psoriasis is not a cosmetic issue. It is not simply a rash.

“It is an autoimmune disorder that can have a negative impact on the quality of life and sometimes very serious negative affects on the general health of its sufferers.

“Sometimes it feels like I’m trapped in my own body. Unbearable itchiness that feels like stinging instead of itching. I suffer from sleep deprivation because I itch in my sleep. Dehydration is also a side effect, which at one point put me in the hospital when I had a psoriasis flare of 80% of my body.

“As long as we treat it like a cosmetic issue, we are not going to raise the awareness we need to find a cure.”

“It makes dating hard.”

Holly Dillon, late twenties, was diagnosed with guttate psoriasis aged 14.

“I’m a single late 20-something gal and I’m on the dating scene and between finding the perfect rom-com boyfriend and swiping through all dating apps, I have found that living with psoriasis and dating is yet another added layer that comes with the condition. When do you tell your date? What will they say? How will they react? As if the first date wasn’t awkward enough!

“In all truth, bringing it up and hitting preconceptions out of the park has been my go-to - no it’s not contagious, not an STD, yes it can hurt, especially during the friction that can come with sex.

“Sometimes I don’t feel sexy, sometimes I’m embarrassed, but overall I’m comfortable in my skin and you should be to if you’re dating me. Living with psoriasis absolutely flips the societal vision of sex on its head - your skin can flake and be all over the sheets, you can bleed, your skin isn’t smooth like every poster girl we see, it can get messy. But hey, this is real life, this is reality, and this is passion with your psoriasis.

“So my advice would be never be afraid to be you living with psoriasis. If anyone rejects you for living with it, be it dating or a one night stand, then they aren’t worth it and have far bigger issues than psoriasis. Be empowered by your condition, #getyourskinout and start a conversation around living with psoriasis and definitely keep having sex.”

“It affects every part of life.”

Michael, 44, began suffering with psoriasis aged 14.

“It’s restrictions go beyond the purely physical and affect psychological, sociological, emotional aspects of life; eg. Issues around self-esteem and interaction.

“It can affect what you wear, how you carry yourself before others, responding to comments, feeling unable to go swimming publicly, intimacy, effects of constant itch and pain, awareness of stares, brushing off dandruff, hoovering up skin, embarrassment of giving lifts in car with shed skin. I could go on.”

“It can be a sign of a deeper problem.”

Jane Austin, 52, began experiencing psoriasis at the age of 25.

“My dad died when I was 24. We didn’t know each other well - he was largely absent in my childhood - but I guess his ‘absence’ was as significant as if he’d been an involved parent. A year after his death I suffered from depression and that’s when my psoriasis began.

“Over the last 20-odd years, it’s been my companion, sometimes being more vocal or obvious than I would like, but I have learnt to realise that its presence is a clanging bell that something is upsetting me and I need to take stock. Stop drinking red wine for a while, get some early nights, remove myself from the company of people that drain me.

“What I have learnt from my psoriasis is to try to welcome it and use it on my body as a barometer for how I’m living my life. I would ask people not to stare or point at my hand, elbows and knees on public transport, don’t move your children away from me. Don’t loudly ask ‘Whassat?’ You’re not a fucking moron, it’s some dead skin, there because I’m temporarily feeling vulnerable, lost or bereft.

“To go back to the bereavement point: in the old days, mourners would wear a black armband for a year just to let people know that they were a bit sad, shaky and not quite in the game. Please treat my psoriasis like a black band and show consideration.”