Holly Dillon, now 27, has lived with psoriasis since she was 14. Two years ago, she was told that she had ‘failed’ a series of treatments, which sent her into a downward spiral: “If you are failing the options that are currently known and available on the NHS, then what the fuck do you do?” While trawling pharmaceutical websites and NHS help sites, what she missed was human contact. So she traded in her fast-paced job as an assistant director to go freelance, while setting up Get Your Skin Out on the side, an initiative that campaigns for greater awareness about the disease and lobbies for change in the healthcare system.
The campaign launched with a series of photographs taken by London-based photographer Lewis Khan that show Holly undergoing PUVA (phototherapy) treatment – naked and covered in psoriasis, the images depict the disease intimately and are helping to bring psoriasis firmly into the public eye.
"I’d never met anyone or spoken to anyone with psoriasis before I started Get Your Skin Out. All of a sudden I opened up these floodgates: the instant reaction was positivity and relief", says Holly.
Psoriasis is an autoimmune disease that manifests in raised plaques (skin lesions) all over the body, caused by an increased rate of skin cell replacement. Holly has guttate psoriasis, which appears as small plaques across the skin, much like chickenpox. The disease can be itchy and painful and, in a culture obsessed with purity – from clean eating to clean living – it doesn’t fit with traditional standards of beauty and hygiene. A common misconception is that it is contagious. Around 2% of the UK population is thought to have psoriasis and each case is unique, making it both prolific and difficult to identify and treat. It's effects are far from skin deep, a recent study from the Psoriasis Association found that 94% of young people with the disease experienced anxiety and depression. Add to this the fact that psoriasis is notoriously under-researched and under-funded, and access to information and effective treatment is a real struggle.
In the last few years there has been a growth in services, like Leo Innovation Lab, an independent organisation that addresses the broader effects of the skin condition; PsoHappy, a new app designed to asses the mental health of those living with psoriasis; and clinics, like the Salford Royal Trust in Manchester, devoting time and research to the disease. Celebrities with psoriasis, like Kim Kardashian and Cara Delevingne, have helped raise awareness around the disease by refusing to cover up on the red carpet and catwalk. Get Your Skin Out adds something unique to the mix, creating a supportive and personal community online and offline.
“Get Your Skin Out aims to empower people living with the disease and start an open conversation about it,” Holly explains. To begin with, it lays out what your options for treatment are, since most people living with psoriasis will go through numerous types of treatment before landing on something that works, and even then it may only work for a limited period of time. “With the NHS, you are confined to a 10-minute appointment – so you have to be prepared to be the person that drives the conversation: demand to see a specialist, know what treatment is available to you”, says Holly.
The different treatments available include topicals (steroid creams), phototherapy, systemics (oral treatment), and biologics (injections). With phototherapy, you can be in hospital three times a week for several months, while biologics have only really been available for the last couple of years, and research into their effects is limited to a decade. Taking medication can weaken your immune system and have other health risks – those with psoriasis can often end up in hospital with liver and kidney problems. Options therefore come down to time management and risk, and even if you are willing to try the riskier treatments, due to NICE guidelines, you need to go through certain steps of elimination before they are available to you. The process can be a minefield, which is why Get Your Skin Out provides a bank of information, with people anecdotally sharing the treatments, moisturisers, exclusion diets, and lifestyle changes that worked for them.
It’s not just about the clinical side of things, however; for Holly, the point of Get Your Skin Out is to look past the skin manifestation and address the disease within the context of the whole person, physically and mentally.
“Dermatological conditions, historically, may have been viewed as more of a cosmetic problem,” says Dr. Alia Ahmed, psycho-dermatologist and a leading figure in psoriasis treatment. “New research shows that the inflammation seen in the skin may extend into the brain and cause symptoms of low mood.” From sleepless nights to time-consuming treatment, stress over flaring up to anxiety about what others think, psoriasis plays upon the mind as much as the skin. Get Your Skin Out combats this sense of loneliness and encourages people to talk about the condition.
“I was surrounded by an open platform which enabled me to stop feeling sorry for myself,” says Ella Lavene, who at 17 is one of the youngest active members in the community. Through the hashtag #getyourskinout, people connect and post their psoriasis stories online. Holly often regrams these, as well as sharing information about upcoming events and new treatments on her own Instagram, @getyourskinout. “As I read more and more stories, I noticed myself holding my head a little higher and being proud to be part of such a supportive group,” Ella continues. Her story mirrors many others: “I was constantly worrying about the crusty scales all over my body and flakes in my hair.”
You cannot visibly identify with words. It’s so important to have something that you can look at and go ‘Oh my god, that’s me.’
After an “ongoing battle of misdiagnosis after misdiagnosis”, hiding her condition with a large headband and baggy clothes, Ella was finally referred to a specialist. She has gone through several treatments with varying degrees of success (one suppressed her immune system so severely that she was hospitalised) and has now “reached a real crossroad” in her journey: “While my dermatologist recommends starting biologic treatment, I feel that, as the days counting down to my A-levels lessen, it's too much of a temperamental time to start.” But she remains hopeful: “What pulled me through was the realisation that having psoriasis is nothing to be ashamed of. Although I may not be in control of my condition right now, I have never felt more in control of my emotions towards it and the Get Your Skin Out initiative has had a big part to play in that.”
This February, along with fellow psoriasis campaigner Lianne Hunter, Holly launched the first Get Your Skin Out event. The line-up featured Dr. Alia Ahmed, mindfulness teacher James Milford and diet expert Hanna Sillitoe. Under the iridescent neon of trendy central-London venue Lights of Soho, bodies glowed and the positive atmosphere was palpable. One of the central tenets of Holly’s philosophy is approaching the disease inclusively, accepting it as part of your life in order to come to terms with it: “It’s about balance. There was a point when it was always ‘me’ and then my ‘psoriasis’. When you are living with something that is visibly all over your body, and which impacts everything that you do, it’s important that it’s included in the everyday, not excluded."
During the event, it quickly became clear that psoriasis is often sensationalised due to misinformation. “I once had a journalist want to write an article with a title describing me as a ‘shedding snake’,” says Kate McShane, who through the campaign has been inspired to start her own blog, KLMPSORIASIS, documenting her psoriasis journey. The terms used to talk about the disease create a culture of shame: from the idea that you can ‘fail’ treatment, to talking about ‘stress’ as a trigger – which Holly deems "the most general, ill-defined term that brings no clarity or poignancy to the condition" – to pejorative descriptions like ‘flaky’ and ‘disgusting’ used by the media. The language we have is ill-equipped to conceptualise the condition; with Get Your Skin Out, the conversation is given space to expand. The event fostered a better understanding of the disease and encouraged people to take different approaches toward it, as Kate explains: “I’ve always honestly been sceptical of diet [improving] psoriasis, but I am definitely now open to different recipes. James was amazing: a reminder that keeping our mental health strong is just as important as anything else."’
Part of the problem of the conversation surrounding psoriasis is that it's verbal: “You cannot visibly identify with words. It’s so important to have something that you can look at and go ‘Oh my god, that’s me’,” says Holly. Follow #getyourskinout and you will see a plethora of images posted by people living with the disease. Lianne takes pictures of her "leopard spots" while Holly looks fabulous in an exposing black dress, ready for a wedding, covered head-to-toe in psoriasis. The photographs are a living archive, documenting people's experiences with psoriasis – from the banal to the exceptional. Through this, the veil of ignorance that shrouds the disease is lifted, and it is assimilated into cultural consciousness. “You flip it on its head and make it something positive,” says Holly. "Lewis’ photos redefine what the norms of beauty are and can be."
Looking to the future, the movement seems set to expand. Under one arm of the campaign, Holly and Lianne plan to host several more events, tailored to address specific aspects of the disease. Separately, Holly will continue to lobby for more research and, perhaps most excitingly, has plans to realise the visual potential of the condition in technicolour glory. “It’s currently under wraps,” she tells me, “but I can say that there are some exciting fashion opportunities and brand partnership”. She has also launched stylish black tote bags for the summer, emblazoned with #getyourskinout.
This is just the beginning, however. Change at policy and institutional levels is needed to have a lasting impact on the lives of people with psoriasis: “We need the government to invest in services that match the lifelong nature of the disease,” says Holly. Considering how much she has changed public perception using grassroots tactics, it’s amazing to think what could be achieved with governmental backing: “We need to invest in training, research and management and have psoriasis-specific centres that address the disease as a whole. One place where you can see a dermatologist, a counsellor and a nutritionist. With funding, we can eliminate stages of treatment, improve the quality of life of millions of people.” So what are you waiting for? Join the movement. Get Your Skin Out.