INTERVIEW Living with rheumatoid arthritis

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Ann Marie Healy, author and tireless campaigner for the rights of people with disabilities.?
INSPIRATIONAL
?Ann Marie Healy, author and tireless campaigner for the rights of people with disabilities.?Pic: Evita Coyle

Living with rheumatoid arthritis


Interview
Ciara Moynihan

Since the age of five, Ann Marie Healy has battled a condition that many associate with old age: rheumatoid arthritis. While it affected her from its very onset, she was not diagnosed until she was ten years old, and it was many years before she received appropriate treatment.
Born into a family of 16 children – the fifth oldest of nine boys and six girls – in the village of Ballinaboy in north Mayo, Ann Marie was just like any other young child. She enjoyed the freedom and joy of living in the countryside, surrounded by family and friends. “I was always running around, playing with my brothers and sisters and school friends,” Ann Marie, now 45, remembers. But soon began to change dramatically.
“I would get very, very tired. I was taken to the GP and he said I had rheumatic fever, which is similar to rheumatoid arthritis, but not the same,” she explains. “I was taken to Mayo General [Hospital], and I was there for a few months, undergoing tests and investigations.
“Eventually I went home, and I thought, ‘This is great now, I’m going to be grand!’ … but I noticed when I went back to school that I was still very tired. I thought things would improve over time, but they didn’t.
“By the age of eight or nine, I was really sore, and really, really stiff. My neck especially. I found it hard to look around at the person next to me in the classroom. My hands were swollen, so I was having difficulty in writing as well.” Ann Marie was resubmitted to hospital, and it was discovered that she had rheumatoid arthritis, much to the shock of her parents.   
In rheumatoid arthritis, the immune system attacks the body’s joints – and sometimes other parts of the body – for no reason. The attack can go on for a long time, or it can come and go.
Between one and three people in every one hundred develop rheumatoid arthritis. Most of these people, around three-quarters, are women. Although the condition is much more likely to develop in middle years – between 30 and 50 – children, young adults and older people can also get it.
“There are 5,000 young people in Ireland with rheumatoid arthritis,” says Ann Marie. “It can affect you as young as three or four years of age. Most people associate it with old age, but recently a lot of young people are getting diagnosed with it as well. The most important thing is to get diagnosed and treated. If it’s left untreated it can cause disability.”
Ann Marie went to secondary school in Rossport, and during that time, she recognised that her condition was getting worse. At 14, one of her hands started to close in, and writing became more and more difficult. Eventually it was decided that surgery on her hand was the best option. That operation, which was successful, was to prove the first of many she would have to endure.
After completing her Leaving Cert, Ann Marie attended a computer-based office-skills course in Ballindine, but was unable to finish it, as her arthritis had worsened. At the age of 26, she finally went to see a rheumatologist in Manorhamilton, Co Leitrim, only to be told that her condition had become so bad, it was ‘mostly about maintenance at this stage’. The majority of her joints had become damaged.
Operation after operation followed. Ann Marie has had surgery on her hands, feet, hips, knees, shoulders and elbows. She has had 13 joint replacements in total. Most recently, last May, she underwent knuckle-replacement surgery.  
Despite being in constant pain, and being wheelchair bound since 2003, Ann Marie – who was named Erris Person of the Year in 2008 – has embraced life, refusing to allow her condition define who she is. She has studied Social Care in Sligo, and is heavily involved in the Irish Wheelchair Association and Arthritis Ireland.
Above all, Ann Marie says, positivity and keeping busy have helped her overcome the pain and inevitable mental lows that accompany her condition. “If do get down, I make sure to get talking to someone who is positive. And I just have to keep going, keep getting involved in things – courses, community projects, whatever – because, when I’m not doing anything, the pain will just take over. Distracting your mind is so important.”
Over the years, Ann Marie became close to prominent disability campaigner and author Pat Hallinan from Killawalla, who died in 2009. It was he who encouraged Ann Marie to put her incredible story of resilience down on paper.
Since she was a teenager, Ann Marie had kept a diary detailing her thoughts and emotions as her health deteriorated, and she has now published that diary in book form. ‘Be Yourself – My Diaries’ provides extraordinary, personal insight into what it is like to live with disability in Ireland today – and inspiration to all who read it.
And now? Now Ann Marie’s attention is focused on lobbying for the appointment of a rheumatologist in Mayo General Hospital, ‘so that people like me don’t have to travel to Dublin all the time’. She also continues to lobby Government representatives on the rights of people with disabilities, and is particularly passionate about access and the vital importance of personal-assistant services. Ann Marie was among the group of campaigners that protested outside the Dáil against the Government’s withdrawal of personal-assistant funding last year. One thing is for sure, this committed, dynamic woman will continue to be active and a positive force in all she seeks to do.

‘Be Yourself – My Diaries’, by Ann Marie Healy, is available from www.choicepublishing.ie and www.amazon.co.uk, as well as The Castle Bookshop and McLaughlin’s Bookshop in Castlebar, Easons in Ballina and locally in Erris.

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