Bryony and the psoriasis she suffers with.Bryony Bateman

I grew to love the psoriasis that nearly killed me

I woke up and screamed. My skin felt like it was on fire. It was red hot and it felt like I was burning from the inside out, but I was also freezing cold with chattering teeth. I knew something was seriously wrong. My mum took me straight to hospital, where the doctors told me that my body had gone into a state of shock.

When I woke up, I was told I had erythrodermic psoriasis– a very rare and dangerous skin condition. If I hadn’t got to the hospital when I did, I could have died.

I was 21 when that happened last year, and I’d already been living with psoriasis for five years.

The NHS explains psoriasis is“a skin condition that causes red, flaky, crusty patches of skin covered with silvery scales. In some cases, the patches can be itchy or sore.”

That had been my reality since I’d found a weird red rash on my stomach, aged 16. At 18, a dermatologist eventually diagnosed me: I had the incurable condition of psoriasis, and I’d have it for life.

At first, I hated it. I covered it up as much as I could and tried light treatments and while they work for many other people it made it worse for me.

I ended up with burns and open wounds all over my body. Whenever I moved, my back would crack and bleed. It was excruciating. I remember one doctor telling me I looked like I’d been run over.

I was eventually given medication that cleared up my skin, but they left me with white patches - they looked a bit like vitiligo.

People would stare, point and make nasty comments. Once I was on a night out in a skimpy spirt and crop top, when a boy pointed to me, nudged his mate, and went: "look how rank her fake tan is." Another time I was in a bikini on the beach and a mum pulled her young son away from me, saying: "don’t go near her.".

People think it’s contagious. They point, whisper and stare – they treat you like a leper.

And the side effects were horrific. I constantly felt sick and my liver and kidney function got so bad my doctors began to worry.

Bryony on holiday and in a hospital bed.Bryony Bateman

There were times when I felt like absolute crap. I thought, why is this happening to me? But there came a point when I just stopped caring.

I started to bring it up as soon as I met new people. That way we could have the conversation, I could educate them on the basics – including how it's not contagious! - and we could move on.

The girl who assumed boys wouldn’t want to touch her disappeared, and I started to talk about it on dates. I showed my now-boyfriend photos of how bad it used to be on our second date, and asked him: ‘will you be able to cope if it turns into this again?’ He told me he would, and in the last few years, he has done exactly that, coping with me bleeding, scabbing and shedding like a snake.

It has limited my life in some ways. When I have open wounds, I can’t swim, and I don’t wear tight clothes as they irritate it, and I rarely wear white because I bleed all over it.

I still hate it when it’s really bad, scabbing and painful. But I despise it because it’s causing me pain. When it’s okay, and I’m just having ‘mini-flares’ – which probably look really bad to other people – I’ve grown to actually really like the look of it.

I think psoriasis looks pretty. I really like the white patches and I love my body with its scars. I love pictures of my tummy – I often post them on my Instagram - and when it doesn’t have psoriasis on it, it looks weird to me. I love showing off the little patches on my belly on nights out because it makes me different. I don’t look the same as anyone else, and my boyfriend agrees.

Bryony and her boyfriend, and dressed up to show off her skin.Bryony Bateman

When my psoriasis leaves scars, he says ‘your belly looks so cute’. And it does, it looks like little cherry blossoms. Honestly, I would happily have psoriasis over my entire body if it didn’t hurt.

People often want to know how I have so much confidence. But for the past six years, I’ve taught myself not to care. I’ve taught myself to accept it. It isn’t going to go away. I’ll have it forever so I have to learn how to deal with it – and I now, literally, have a really thick skin.

Before I had psoriasis I used to be so insecure about every little thing. Now, having to walk around with scabs, I’m so much more confident. If I get a spot, I don’t care. I’ve dealt with much worse.

My main mission now is to help other people feel the same way about their psoriasis, and to help society get to a point where it sees psoriasis as equal to eczema. No one stares at people with eczema or assumes they’re ‘contagious’ and ‘dirty’ so why do they do the same with psoriasis?

I know that if I have kids, they’ll probably have psoriasis. So I just hope that by the time they’re 16 and flaring up, there’ll be enough awareness that people won’t stare at them. And maybe, more people will feel the same way that I do, and start to love their psoriasis for what it is - with its sweet, swirly patches and pretty red blossoms.

As told to Radhika Sanghani

Originally published 27 October 2017.