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psoriatic arthritis
When Kirsty Crook, 31, first noticed a tiny red patch on her forehead about 10 years ago, she thought little of it.
But in time, more and more vicious blotches sprang up until, eventually, her scalp, face, back, legs and groin were covered.
Initially, she was diagnosed with the skin condition psoriasis, but that developed into psoriatic arthritis – where the immune system attacks healthy tissue.
Her confidence in tatters – not least because of cruel strangers telling her she looked as if she had been burned in a fire, or was contagious – Kirsty, of Liverpool, Merseyside, England hit rock bottom.
But now, although she still feels self-conscious when it comes to dating, she is determined not to let her condition ruin her life and takes comfort in sharing her journey on social media.
She said:
“I would never go out wearing shorts, skirts, dresses or short sleeves. I'd even wear long sleeves in the summer because I would be so worried about people being judgemental."
“People came up to me and asked if I had been in a fire, and a lot of people would say, 'I'm not touching what she's touched because it's contagious'."
“I'd do everything to cover it up. I'd put loads of make-up on to hide it even if I was just going to the corner shop."
Kirsty continued:
“It takes a long time to become comfortable in your own skin – and some days I'm still not there. But I want people to look at me and see that I'm still smiling."
Kirsty, whose mental health was so impacted by her condition that she had to give up her job in management referral for the NHS two years ago, explained that her nightmare began a decade ago with a tiny mark on her forehead.
A year later, in the winter of 2010, she was officially diagnosed with plaque psoriasis, the most common form of the condition.
Over the next five years, it gradually spread until 95 per cent of her body was covered.
Then, aged 30, she was also diagnosed with psoriatic arthritis – a long term condition which develops from psoriasis and can led to joints becoming permanently damaged.
She explained:
“When I got those first patches, I was under a lot of stress. I had been working three jobs and then I broke up with my boyfriend of three years."
“But after five years, it was so bad that nothing would get rid of it," she said.
Going back and forth to the doctor, Kirsty has tried everything from prescription creams and phototherapy, which involves exposing the skin to ultraviolet light under medical supervision, to methotrexate, a chemotherapy drug.
Sadly, though, nothing seemed to have much of an effect.
She said:
“All of my left leg was covered in blotches, from my groin to my toes."
“It was on my back, front, face, scalp and even in my ears, which still affects my hearing."
“They are angry, red raw blotches and you can't get away from it."
Kirsty explained:
“I couldn't go swimming because of the chlorine, or wear perfume because it was an irritant. I couldn't even shave my legs."
“The heat was especially bad. It'd be so itchy that I'd feel like I had ants crawling all over me, while in the winter it would crack and bleed to the point where I couldn't lean or sleep on it."
Also battling the pain of her arthritis, on her worst days, Kirsty could scarcely get out of bed.
Eventually, two years ago, she hit rock bottom, and was forced to give up work because of the profound affect her ordeal was having on her mental health.
Kirsty, who is currently single, continued:
“It really knocked my confidence, and I needed constant reassurance from everyone in my life, which isn't healthy.:
“It's affected my romantic relationships and dating life in particular."
“I try not to stay at people's houses because I'm so paranoid about bleeding on the sheets," Kirsty continued.
“When I take my clothes off it's like it's been snowing because of all the dead skin. I get embarrassed and feel guilty."
“Because it is also on a private part of my body, again I need that reassurance."
Kirsty continued:
“I've been single for a few months and I feel like if I met someone, I would have to tell them what I have and let them know I understand if they don't want to stay. Although having said that, I've never met anyone who was bothered by it."
Thankfully though, there is a light at the end of the tunnel for Kirsty, who said she is feeling in a much stronger place mentally, compared to two years ago.
For the past six months, she has been having fortnightly injections of Amgevita, a biological medicine used to reduce inflammation by acting on the immune system.
Happily, it appears to be treating both her arthritis, and improving her skin.
Kirsty said:
“I got to wear a dress for the first time in 10 years this summer. I felt like a princess because I usually go out in a tracksuit or jeans."
“I could shave my legs without them bleeding. That was one of the happiest days of my life."
“People were telling me that I looked well and had a healthy glow. It's amazing because nobody had said that to me before." Kirsty said.
“It is now manageable so, I feel really excited about the future and what I might achieve."
“After the injection I will feel knocked out for a couple of days but then after that I will feel like a ballerina or that I can run a marathon."
Kirsty has also started sharing videos and pictures on Instagram – finding a community of psoriasis survivors who turn to her for advice.
She added:
“I would put up little videos of me doing make up, and people would ask me to tell them about myself."
“I thought I had not seen much about arthritis in younger people, or psoriasis so I wanted to share my experience and how I cope."
Kirsty explained:
“It really opened my eyes. Lots of people messaged me saying they had the same, and that seeing me share my experience had given them more confidence."
“I share with my followers if I'm having a bad day or struggling with my mental health. I'm never fake."
“If I'm feeling really low, I imagine myself in the tunnel and I keep going to the light."
“Things will be thrown at you along the way – but you keep fighting and you will get there eventually," she added.
You can follow Kirsty on Instagram @kirstycrook_29.