In honour of World Psoriasis Day, we sat down with Holly Dillon, founder of the #GetYourSkinOut movement. Now 27, Holly has lived with psoriasis since she was 14, and has been campaigning to raise awareness for the autoimmune disease over the past three years. Having suffered from psoriasis myself, for several years, the personal connection I have to her work is huge – I’ve sought out the Instagram page in times of need, when I’ve needed to feel less alone.
Over 2% of the UK population are suffering; it’s a prolific but widely misunderstood disease. Whether you suffer from psoriasis, or not, this GRL TALK segment will open your eyes to the reality of living with a chronic disease…
What’s the movement and why did you start it?
#GetYourSkinOut is a movement to raise awareness for the autoimmune disease psoriasis. I’ve lived with psoriasis (predominantly guttate) for 13 years. It’s about giving people who live with it a platform for support; to share across every which way of life psoriasis can affect you- from the mental to the physical aspects. I started it because I was told by a doctor that I’d ‘failed’ every available treatment at that time. Psoriasis is chronic, so to get told you’ve failed something that’s a lifelong disease, sent me into a downward spiral.
On the back of that, I went home to look up more support. I really wanted to speak to people who understood, beyond at 7-minute dermatology appointment, every 6 months. There really wasn’t that support network out there, and the ones that did exist were largely pharmaceutical companies with the biased motive of wanting to sell a product. Nothing that was out there felt organic, or true, to people living and existing with psoriasis.
It wasn’t being normalised. For me, it was about starting a platform where I could share, and potentially meet others. Looking back on it retrospectively- I had no idea what I was doing, I just needed to speak about it. Where it is today has been such a bonus, and I’m so thankful for everyone that shares on every level.
What’s the biggest misconception about psoriasis, that you’d like to change with the platform?
I think living with something that is chronic, like psoriasis, there are many misconceptions. There are misconceptions in the community, amongst people living with it, there are misconceptions from the outside world, and there are misconceptions from westernised doctors. #GetYourSkinOut was about challenging those misconceptions and talking it out.
One misconception for those living with it is that you’re confined and that you can’t live a happy life. That’s not to undermine it because it’s not easy. Depending on what route you chose, you are living with something that can be quite debilitating. Therefore, the movement was about taking those misconceptions, flipping them on the head, and finding a solution. One thing I always say is “it’s not about ‘I can’t get in the pool because of my psoriasis’. It’s about what are the 10 steps to take, to make sure you feel comfortable getting in the fucking pool”. It was about more education and awareness.
In terms of the wider public, the biggest misconception is the obvious- that it’s not contagious. That it’s not eczema. That it is a big deal. The percentage of people living with it is 1.6 million in the world. That’s a huge chunk of the population. Not enough people are talking about it – it’s chronic, and affects everything you do. It needs to be considered as more of a big deal. Just because it doesn’t obviously debilitate you, or isn’t as extreme as something like cancer, or as widely spoken about like eczema, doesn’t mean it doesn’t deserve that platform. Because it’s not just a skin condition. It’s an autoimmune, chronic disease. We as a community need to be carrying over the conversations to public settings. Be it to your work, your doctor, or when shopping in H&M.
The other big misconception comes from doctors. I love the NHS, and if that’s the route you want to go down, then great. But doctors, specifically dermatologists, need to understand that this is a chronic disease and that western medication is only one route. That they should never say no to alternatives and be more careful about the language they use.
Knowing the options available and feeling confident enough to say to a doctor that you’re not happy with what they’re offering is a big part of this movement. When something’s chronic we shouldn’t be stopped exploring all options. #GetYourSkinOut is about empowering the community so that they feel confident to ask those questions.
What are you most proud of since starting? Has anything stood out, or is a more general feeling?
It’s the more general movement, I didn’t have any expectations so here on out everything has been a bonus. Something that still gives me shivers, is when someone looks at the campaign from a distance and says “It’s great, but I’d never do this. I’d never #GetMySkinOut”. There have been multiple cases when the next day, those people have had a ‘fuck it’ moment; they’ve been so inspired by the community that they share. People sharing is the biggest thing I’m proud of. Yes, I started it, but I couldn’t do it without the individuals building this community.
In which ways does this community help other communities who are challenging what society deems as normal?
A big part of the campaign that people have resonated with is the body positivity angle – women are completely confined by what beauty is seen as in society. In terms of your skin, it’s ‘meant’ to be very clear. You’d never see anyone with something like psoriasis, let alone a spot, in mainstream media. Those things are considered abnormal, so a key message is showing that this is normal. That I wake up like this (yes, I did just quote Beyoncé).
It’s about challenging the normative concepts of beauty. Having perfect skin is bullshit, and doesn’t represent society. #GetYourSkinOut challenges that. It’s giving people the confidence to feel beautiful, sexy, powerful and intelligent with their skin condition.
For the question we ask everyone in GRL TALK, what would you go back and tell your 16-year-old-self?
I’d tell myself that there’s power in the things that you may see as your weakest quality or point. The more you are yourself and spend time understanding that, it will become your greatest power. I never thought that psoriasis would be something I’m overjoyed to speak about every day. Therefore, living with it has made me 15 times happier. Society would see that as something ‘other’ and irregular. But I’ve found happiness through it, by just being myself.
Join the movement @getyourskinout
Find out more about Psoriasis HERE.