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Holly Dillon
Holly Dillon via Instagram/@getyourskinout

#GetYourSkinout’s Holly Dillon on the realities of living with psoriasis

TextHolly Dillon

To celebrate Psoriasis Awareness Month the health campaigner shares her story of living with the autoimmune disease and working towards a diverse and inclusive future

I’ve lived with psoriasis for 15 years and it’s been one hell of an emotional journey. And yet, I wouldn’t change it for the world. Does it have challenges? Yes, absolutely. Can it be a (literal) pain? Of course. But overall living with psoriasis has helped make me the person I am today.

There are many misconceptions surrounding psoriasis – so let’s clear some up. Psoriasis isn’t a skin condition and it isn't contagious. Instead, it is an autoimmune disease that visibly manifests on the skin, presenting as red patches on your body. Approximately 125 million people live with it globally (for Londoners that’s around one person on every red bus).

Because of these misconceptions, living with psoriasis puts you at the receiving end of countless unsolicited comments, stares and confusion as people try to figure out what’s ‘wrong’ with you. No, it isn't eczema, no it isn't bug bites, no it isn't a rash, and yes, believe me, I've tried that cream. Nothing works, because currently there is no known cure for the disease. 

Now we’ve got the facts straight, let’s go back to when I was 14 and first diagnosed with guttate psoriasis. It first appeared on my chin and I thought it was a spot. I’d never even heard of psoriasis, and, as it turns out, neither did my GP in London when I saw them. I was given a few topical steroid creams to try to see if it would abate. It did not. This first experience pretty much defined the next 15 years of my life. Doctors I visited were semi-informed and only treated my psoriasis at surface level. An exploration into the real root cause of it was seemingly never of interest, despite it at one point covering 98 per cent of my body. 

Over time, I became defined by my psoriasis. I wasn't allowed to just be me, Holly – a London gal enjoying her twenties.This, as you can imagine, was incredibly frustrating. So, in 2016, I decided to fight back, and take matters into my own hands, which I did by launching a campaign and digital movement called #GetYourSkinOut – an open platform for positive conversations around psoriasis, built by us, for us. 

The campaign invites people to share through intimate images their experience of living with psoriasis in a positive, progressive way. #GetYourSkinout is a motto and a call to action – to encourage people to not be ashamed of living with psoriasis or any other condition, and instead empower them to be vulnerable and excited about taking back control of their lives.

Being online has allowed my campaign to reach a global audience in ways that I could have never imagined were it not for social media. The response has been phenomenal. Since its launch, the campaign has had over 14k submissions, creating an invaluable network of people all over the world who want to get involved.

However, it hasn’t all been smooth sailing. In the last year, both my account and the hashtag have been blocked by Instagram numerous times. The personal content I shared on Instagram was flagged for being offensive. My body, my story, my life was deemed inappropriate to share – a clear message and example of how something considered ‘other’ or different like psoriasis is still being defined by its misconceptions and not widely recognised or accepted as a norm. This needs to change. 

In the last few years, celebrities like Cara Delevingne and Kim Kardashian-West have joined the conversation, speaking out about their experience of living with psoriasis, which has further helped to destigmatise the condition. Kim Kardashian-West’s global reach and influence is unparalleled, and through it, she offers hope to those living with a condition that is often deemed as an unsightly flaw. But her recent comments pegged to the launch of her new body foundation are cause for concern. Is a product that promises to cover up our condition, really what the psoriasis community needs? Surely, it’s a deeper understanding of the disease and education on how to live well with it both mentally and psychically that is more urgently required? 

For those who find the need to cover their psoriasis up, Kim’s product is a gift, but the greater gift lies in the self-confidence you’d eventually feel with greater acceptance and understanding of psoriasis. This is something that lies at the heart of the #getyourskinout movement; a desire for people with psoriasis to live unapologetically as ourselves, to not sit back and let others define you, to be the change you want to see.

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