‘I KNOW FOR YEARS I thought I was alone because no-one talks about it’
Broadcaster Zoe Ryan on being diagnosed with psoriasis in her teens and learning to cope with the condition… By
Zoe Ryan has opened up about her experience of being diagnosed with psoriasis at 18 years old — and how she hopes her journey may help others. Psoriasis is a chronic, genetic condition that affects at least 73,000 people throughout Ireland. It can cause flaky, scaly and itchy pink or red patches on the skin.
One third of patients may be predisposed to developing psoriatic arthritis, an inflammatory disease that primarily affects the joints of the hands and feet, and which causes pain, swelling, stiffness and joint damage.
The broadcaster recalled to Chic how she was in her Leaving Cert year at the time — and that with exams and college around the corner, she had“bigger, pressing matters on my mind”.
She said,“i was always a very studious person and so for me, the sole focus back then was just my exams and through school, and into college.
“It was kind of an inconvenience for me, to be diagnosed with a condition that required constant maintenance and kind of upkeep.
“For the most part, during that time and in the years that followed, my parents, I would say, were the ones who really took the steer on my treatment plan and with my upkeep of it.
“Back then, I had never even heard of the condition psoriasis — even though it’s something that affects a lot of people.
“I think there’s a lot of reasons why we don’t hear about it, the main one being that — a lot of people who have it, I suppose, like anything that affects you visually, they don’t tend to talk about it. They don’t tend to openly speak about it or show the markings on the skin.
“I think that all ties into the idea that in the world we live in, it’s as if you have to look a certain way. The markings on our skin don’t fit that ideal beauty standard.
“I do think in recent years, there has been an incredible movement towards accepting normal skin and people showing normal skin — but back then, that wasn’t a thing. It was a case of, if you had anything like that that made you different, you hid it — you didn’t dare tell anyone about it.
“And that’s the way that I was for a long time with it. I suppose my fear was — like, at that age, you’re a teenager and you don’t want to stand out for the wrong reasons; you just want to blend in and be the same as everyone else.”
The Co Offaly native added that she didn’t initially“pay much heed to the psoriasis”.
She continued,“my way of coping with it was trying to ignore it and pretend like it wasn’t happening, and to cover it up and not talk about it. I was really in denial for a good few years.
“Because of that, then, I found I was suppressing all of these feelings and emotions I had towards it.”
Ryan told how at the time, she used “clothing choices, positioning of accessories, hairstyle choices, makeup and tans”to“successfully conceal all of the visual signs of my symptoms that I didn’t want people to know”about.
She continued,“during that time, if anyone had asked me, ‘how does it affect you?’ I’d say, ‘ah, it doesn’t at all - it’s fine, it doesn’t bother me really’. But that was kind of me just being in denial myself.
“When I looked back on it years later and reflected on that time, my late teenage years and early 20s in college, it did impact my life in ways that I suppose I didn’t notice at the time.
“Like that, I would have subconsciously been wearing clothing that would have concealed it. It was like something that I just did automatically, without thinking of it — I never looked in the wardrobe and thought, ‘I have to wear that today to cover it’.
“As I said, I would have said at one point that it didn’t really affect me. But it was, and I think I just didn’t want to admit how much it was affecting me.
“For that reason, I found that years later when I eventually did start talking about it, I used to get quite upset when I was talking about my psoriasis — I was going, ‘god, it actually impacted me so much that I didn’t even realise’
“I suppose the early years are what I kind of view as my denial years. And then I went through the acceptance phase, and that’s where I’m at with it now: I’m very confident and proud with the markings on my skin now.
“But there was a time when definitely no one knew, and I would be mortified if anyone did know about it.”
Ryan founded the Itching to Tellyou social media channel to try and raise awareness of and encourage discussion around the topic of psoriasis — told how she hopes to be able to make others who have been diagnosed with the condition feel less alone.
She said,“i know myself, for years I thought I was alone, I genuinely had no concept or idea of how many people out there actually experienced psoriasis and understood it, because no one talks about
it; because we don’t see it in the media.
“Because when we walk outside our door, we don’t see people with the markings on our skin and we don’t have any point of reference to see,‘there’s someone who looks like me; that person obviously knows’ or we don’t hear people talking about it.
“For that reason, we feel like we have to hide and that we have to conceal it. It can be a very lonely place.
“For years, I felt I was alone in this battle and that no one understood me or that no one could help me.
“That is, I suppose, another reason why I didn’t talk about it — because I felt like no one would understand. I was going, ‘I’m alone in this, no one’s going to get it’.
“But since I started my platform and I am very vocal and open about it, I find people come up to me — and I think it’s because people know that I will understand. People have no reservations about talking to me about their psoriasis; people who have never even told anyone else would come over to me and speak to me, because they know — from seeing what I put out, and maybe from hearing me on the radio — that I will understand.
“They’ll speak to me about it and I think it’s so important that we do that; there’s more of us, and we’re vocal about it.
“Because there are so many of us who don’t feel like we can talk about it, the ones of us who do feel like we can — or those of us who are willing to speak about it and tell our stories — it’s very important that we do, so that those people who feel like they can’t, they see us being vocal about it and getting on with our lives. And going, ‘well, if they can do it, then so can I’.”
The 27-year-old added that she hopes that by speaking out about her own story, she“can help other people reach that level of acceptance with their own psoriasis”.
She also opened up about the creation of Itching To Tellyou — and how the idea first began while she was doing research for a project for her Masters degree.
Ryan explained that her“main goal of treatment”at the time was “just to clear the markings from my skin”— and recalled how at the time, she was convinced“there was a cure out there and it was a case that I hadn’t found it yet”.
She continued,“i felt like when I went into a medical setting to speak to someone about my psoriasis or to get it reacted, it was a very quick experience — I was dismissed, I wasn’t really understood by the person who was sitting in front of me.
“I wasn’t seeing the results that I wanted out of the treatments that they were providing for me. For that reason, I decided that I was going to go completely down alternative routes of medicine and seek a cure in that way.
“It just so happened at this time that I was doing my Masters and an opportunity came up for me to create a documentary series, so I said, ‘why not bring a camera crew with me to try some of these weird and wonderful alternative routes to treatments here?’
“And so, that’s what I did. But it was from that experience — I had obviously expected to come out of it finding a cure for psoriasis, which I didn’t, but what I did get out of it was something totally unexpected.
“It was from speaking to treatment providers from different schools of thought — both medicine and all the alternative, holistic routes — that I gained a greater understanding of my condition, which allowed me to come to terms with it and to accept it and finally kind of wrap my head around it.
“The things that they informed me of allowed me to better treat and to manage my condition.”
Ryan told how along the journey of making the documentary, she decided to interview other people with psoriasis — which was“something that I had never done before”.
She continued,“i had never spoken to anyone else who was living with the condition — and it was from the things that they said to me, I kind of felt this anger. I was going, ‘God, this isn’t the way it should be — we shouldn’t feel this way’.
“I found out all this information that was so helpful to me years after developing the condition. I said, ‘if I had been given this information hen I was first diagnosed, I never would have went through the bad times with psoriasis — I would have been able to more effectively manage it from the offset’.
“I wanted to share that information that I had discovered along the journey of filming that documentary with a wider audience. And that’s when I sat down and said to myself, ‘how do I do that? how do I get this information out to people?’”
After brainstorming various ideas from a podcast series to a one-off documentary, Ryan told how she decided on an online platform — and set it up on Instagram, Facebook and Twitter to reach as wide an audience as possible.
She said,“the main reason why I set up the page was exactly that: I was going, ‘I want to reach as wide an audience as I can with this information’.
“And that’s always been the thing: I always want the information I put out to be free and easily accessible to those that need it. I feel like a lot of the information and resources out there that would help you to do just that — to help you better understand your condition and treat it — are just not known about or are kind of nearly hidden in places, or in scientific journals heavy on scientific and medical jargon that people can’t decode.
“That’s why I’ve taken it upon myself to digest all of these medical journals, medical resources, and I’ll put it out on my platform. It’s making information that should be easily accessible that does exist, but that maybe people just don’t know where to look for it, somewhere where it’s free and easily accessible.”
A team of researchers at University College Dublin (UCD) is encouraging people with psoriasis across Ireland to sign up for a new study examining their risk of developing psoriasis-related arthritis or psoriatic arthritis.
If you are interested in taking part in the research study, visit www.hpos. study. The study is open to those over 18 years who have psoriasis, and who have not previously been diagnosed with psoriatic arthritis.
“I FOUND OUT ALL THIS INFORMATION THAT WAS SO HELPFUL.”