Living with psoriasis: 'I had this fear that someone would recoil if they saw it’

From irishexaminer.com

Zoe Ryan recently set up an online platform - Itching To Tell You -  to raise awareness about psoriasis, a chronic skin condition she suffers from  

When Zoe Ryan was 18 years old, a thick, white plaque began appearing on her scalp.

“When I first saw it, I put it down to dandruff or dry skin,” the 25-year-old Offaly woman says.

But when it started spreading rapidly and becoming more aggressive, she knew she had to get it seen to.

At this point, Zoe was diagnosed with psoriasis for the first time — a chronic disorder that does not have a cure.

“I was in complete denial,” she says. “It was as if this white plaque had appeared overnight and I just couldn’t understand that a couple of weeks ago my scalp was ‘normal’ and now I was being told it’ll never be normal again.”

According to the Irish Skin Foundation, psoriasis — which often appears as red, scaly, flaky, and itchy patches — occurs when the skin cells grow too quickly as a result of inflammation caused by the body’s immune system.

“It bothers me when people refer to it as a skin condition,” Zoe says, “people with psoriasis, we don’t just have to deal with the scales on our skin, it’s far more than that.”

The Irish Skin Foundation notes that people who have psoriasis are at risk of developing a form of arthritis, which commonly affects the joints of the fingers, toes and spine. Psoriasis is also associated with a slightly higher risk of diabetes, high blood pressure, high cholesterol, cardiovascular disease, and obesity. There is also a strong association between psoriasis and depression.

“It has a knock-on effect on everything,” Zoe says. “It’s as if someone’s lighting a fire inside you and anything that touches it is going to be damaged.”

Connecting with other sufferers

The Tullamore native, who now works for RTÉ, is speaking up about her experience of psoriasis as part of a new campaign called Innovate For Life, run by the Irish Pharmaceutical Healthcare Association (IPHA), the representative organisation for the research-based biopharmaceutical industry.

                       Zoe Ryan feels there is a lack of awareness about the condition. Picture: Alf Harvey

In May, she started the online platform Itching To Tell You to help raise awareness about the condition and to serve as a safe place for sufferers to share their tips for dealing with the condition.

The decision to create the platform was driven by her experience interviewing people who live with the condition for a documentary film she made as part of her master’s degree at IADT.

One interviewee, in particular, struck a nerve.

“I interviewed my dad for the documentary. He also has psoriasis but he developed it after me, that’s why we weren’t familiar with it when I was first diagnosed with it,” Zoe says.

“He and I had never actually spoken about this shared condition we had and it was definitely from the embarrassment of it, especially with your dad.”

But when the cameras started rolling, her dad opened up. “It’s as if your dad is someone that you think can’t experience pain, they’re strong and nothing can hurt them.

“I remember walking out of the interview and just standing outside crying because I couldn’t believe I had actually just stood there and heard what I did.

“Hearing him talk about how he experienced the world and how he found it so difficult walking into shops and things like that... It really struck a nerve with me.”

Embarrassed about the condition

Psoriasis affects at least 73,000 people in Ireland. Zoe feels there is a lack of awareness and information about the condition and this is in part due to the fact that people who have psoriasis don’t tend to talk about it because of the embarrassment associated with the condition.

“With any condition that [presents] itself on the skin, people are going to be self-conscious of it.

The condition “knocks your confidence,” Zoe says, and for some, to the extent that their life becomes smaller.

“I never let psoriasis stop me from doing what I wanted to do,” she says. “But that doesn’t mean it was easy for me. I’m a lot more embracing of my skin now but there was a time when I would have hidden it at all costs.

“Throughout college, I styled my hair in a certain way so no one would see patches. No one would have ever seen me with my hair tied up. I wore clothes that hid it. If I was going on a night out, I used makeup to cover the patches.

“At one point, I used to hate getting on Dublin Bus because my psoriasis was very severe at the back of my scalp and down my neck and my ears.

“I always had this fear that someone would recoil and step back from me if they saw it, and I just didn’t want to see that.”

For a long time, Zoe says she had “a very bad relationship” with her condition. “I wasn’t listening to it,” she says.

“I wasn’t listening to how it was reacting to the different treatments that I was using on it. I wasn’t taking notes, and giving it time. I didn’t want to understand my psoriasis, I just didn’t want to have it.

“Now I just accept that it isn’t going anywhere, and instead of fighting against it the whole time, I try and work with it, and that has been a far better approach to treatment.”

While she has reached a place where she is a lot more accepting of her condition, she still struggles.

“Throughout my college years, I thought the marks and scales on my skin made me undesirable.

“In relationships, even still, it is something that I hide for quite a long time,” she says.

But she has found generally, people are more accepting of it than expected. “You have built up in your own head what people’s reaction is going to be and you’ve thought of the worst possible situation and you’re just convinced that’s what’s going to happen. But in my experience, it isn’t. People are actually quite kind about it.”

And if someone does notice her psoriasis and asks her about it, she welcomes it. “It’s an opportunity to spread awareness.”

Zoe says she hopes her involvement in the IPHA campaign will help highlight the condition and serve as a beacon of hope to sufferers.

“I thought scientists had forgotten about us,” she says. “But there is ongoing research and new products are being developed.

“I have accepted that there currently is no cure for psoriasis, but I live in hope that someday there will be, so future generations won’t have to go through what I and so many other people currently are going through.”

https://www.irishexaminer.com/lifestyle/healthandwellbeing/arid-40747521.html