Cork film-maker: ‘I had to fight for my diagnosis... the treatment was life-changing’
Étáin's interest in directing was sparked by the Fastnet Film Festival in Schull, which she grew up with.
Film-maker Étáin Nash lived with chronic pain for years, but says she was dismissed by doctors who said she was experiencing ‘growing pains’ or that it was all in her head.
The experience led the Schull native to make a documentary exploring the lives of young people who are living with arthritis and other chronic conditions.
Étáin knew she wanted to explore the effects of living with pain, but didn’t want the documentary to be about her. She reached out on social media for people willing to take part in the project.
The documentary, , features seven young people affected by severe pain including Becky, a 29-year-old ballet dancer who has lupus and has to end her career. Evie, a 16-year-old, has dreams of being an actor, and Abbie is an 11-year-old girl who loves baking and sports.
A graduate of the Institute of Art, Design and Technology in Dún Laoghaire, Étáin, 28, studied film and TV production.
Her interest in directing was sparked by the Fastnet Film Festival in Schull, which she grew up with.
But Étáin’s childhood and teenage years were blighted by a type of arthritis called Ankylosing Spondylitis.
“I had my early flare-ups between the ages of seven to 14. I used to get hip pain, back pain, neck pain and chest pain,” says Étáin.
At its worst, Étáin experienced pain at a score of ten out of ten.
“I had shooting pain down my spine and my legs. It’s a progressive disease, so as the years progressed during my teens, it got worse and worse. I went from having flare-ups every couple of months to every few weeks. I couldn’t walk properly or move. When it got really bad, I had to use crutches. It affected me more at college than at school.
“When I went to college, I got a diagnosis. It took a long time to get. I was sent to different specialists and there were waiting lists to see them. Eventually, I was diagnosed because my dad had a similar condition. He found out he had a gene (for Ankylosing Spondylitis) and I tested positive for it as well.
“I had to fight for the diagnosis; it was very self-driven. My mother also fought for me.”
The autoimmune condition is a type of inflammatory arthritis, similar to rheumatoid arthritis, but it predominantly affects the spine. The treatment for it involves a biologic, an immunosuppressant drug that is injected.
“It is really life-changing. I went from being in pain every day to having pain-free days. My quality of life went from zero to almost normal. It’s amazing and a shame I didn’t have the treatment when I was younger.”
Étáin says Ankylosing Spondylitis is misunderstood.
“Historically, it was associated with a disease in men in their forties. It presents a little differently in women and girls. In females, the condition is less likely to show up in a scan. It affects the joints in the spine and it can also affect your peripheral joints.”
The people in the film, aged between 11 and 29, have different types of arthritis and chronic illnesses. One person has mobile spectrum disorder. Another has juvenile arthritis.
The aim of the documentary is to show the range of people with chronic conditions.
Étáin rarely gets flare-ups these days. “If I do, they’re not nearly as bad as they used to be. I do stretching exercises which help.”
As a director, Étáin has made a couple of short films and music videos and does some commercial work. She also works in production management and does extras casting for film and TV.
“Most of my work is in Dublin and Wicklow. While I worked on , I didn’t get to work on the West Cork leg of it. I’ve worked on and
Étáin says the film industry in Ireland “is very busy. It’s a really good time to work in film in Ireland, although funding is always going to be difficult when you’re an up-and-coming director. You’re competing against a lot of people. There are a lot of really talented directors in Ireland.
“I was lucky enough to be short-listed for funding for a couple of things last year. I was one of the finalists at the Fastnet Film Festival for a Putnam Award. Also, I made the final 32 for the Virgin Media Discovered award for a short film. I do photography as well.”
Clearly highly motivated despite the severe pain that she used to live with, Étáin says she couldn’t keep up with her friends during her teenage years. “They used to do fun runs and a lot of outdoor activities. I couldn’t do that. Even PE was something that I couldn’t do very well.”
But, making up for lost time, Étáin recently completed a two-day hike to Machu Picchu in South America. “That was something I know I would never have been able to do as a teenager. I was very proud of being able to do it.”
Onwards and upwards for this determined young woman...
will premiere at Uilinn: West Cork Arts Centre in Skibbereen on May 30.
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