Hi, I’m Beth and I have a chronic autoimmune disease called psoriasis. I was diagnosed with psoriasis in 2016 and have been shouting about it ever since.
When I was told I had psoriasis, I had no idea what it was or even how to spell it. All I knew was it was something to do with my immune system, it was giving me tiny red blotches all over my body and that there was no cure.
At 22, I had a lifelong disease I was going to have to learn to manage – the future suddenly looked a lot less rosy and distinctly more red and dotty (and itchy – psoriasis is REALLY itchy!).
We don’t know why psoriasis happens (sometimes it’s down to genetics) but it can be triggered by factors such as stress. My psoriasis appeared just after my final year university exams so stress is the main suspect. But there is no point dwelling on its cause – my psoriasis is here to stay regardless of its original trigger.
After almost a year of my skin getting progressively worse, I had been through steroid withdrawal, many dismissive GP appointments and the horror that is winter with the world’s driest skin. I eventually got a dermatology appointment at the local hospital and was put on the waiting list for UVB light therapy treatment. This was when I came across the psoriasis community on Instagram and the #getyourskinout campaign, created to encourage psoriasis sufferers to stop hiding their skin and raise awareness for the disease.
This was a huge turning point for my confidence; I realised my happiness was not based on how clear my skin was but the difference I could make by sharing my story – which I did by posting pictures on my personal Instagram page documenting my progress with light therapy. Up until that point I knew no one else with psoriasis but the more I posted on social media, the more people kept contacting me and opening up about their skin issues.
‘I realised my happiness was not based on how clear my skin was but the difference I could make by sharing my story’
A blog was always on the cards – I was a journalism student and keen to keep writing, plus, people kept asking me for skin advice! This isn’t surprising as nearly everything practical that I’ve learned about psoriasis has mainly been through either following other sufferers on social media or by my own trial-and-error. However, I hit a slight road bump in terms of confidence in February 2017 so my blog took a backseat.
Keen to keep promoting psoriasis awareness, I offered to tell my story to the press in conjunction with The British Skin Foundation, a UK charity for skin diseases and skin cancer. I was interviewed by a journalist over the phone who seemed genuinely friendly and I was excited to see my story in mainstream press – the more attention psoriasis got, in my eyes, the better.
I made some huge errors in this interview which cost me my positive article and a little dignity:
- I didn’t prepare for the interview so I wasn’t keeping track of the key topics that would ensure the positive angle I was hoping for was used.
- I agreed to the word ‘snake-like’ being used in the article. The journalist convinced me that the story would have a much better chance of being picked up by the papers if a word like this was used. I had already talked her down from ‘lizard-like’ (I’m not Godzilla!) and thought that despite the negative connotations of this reference, the positive effects of this article would balance it out. After all, I do shed a whole lot of skin…
My story was unfortunately picked up by a bunch of tabloids and despite the articles themselves being not too damning, the headlines were twisted and were very sensationalist and over-the-top. Not exactly the ’embrace your skin!’ framing I had been hoping for…
So I took a breather from being in the online firing line for a while. However, the time has come to keep shouting about psoriasis. Taking the chance to share my story through the channel of the national media, while pretty disastrous, has also highlighted the stigma that still exists with skin diseases.
My treatments so far have ranged from basic topical steroids and OTCs (over-the-counter) and UVB light therapy – by keeping this blog I hope to share my experiences with others about medical treatments.
I hope this blog encourages people with psoriasis to be brave and bold in educating others about their skin, to embrace their body and to work towards a lifestyle that helps ease your symptoms and stress.
Check out the Psoriasis Association site for more information about psoriasis!