Experiences of living with rheumatoid arthritis collected in new book

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My RA Story authors at the National Library

Some of the contributors to My RA Story pictured at the book launch at the National Library.

 

A book featuring first-hand, personal accounts of living with rheumatoid arthritis, an incurable autoimmune disease that affects 45,000 people in Ireland, is published this week.

“My RA Story” is a collection of more than 40 stories written by people who are living with rheumatoid arthritis (RA). The book features an introduction by best-selling author, Sinéad Moriarty, who was diagnosed with the condition in 2015, and who launched the title in the National Library.

All proceeds from the sale of “My RA Story” go to Arthritis Ireland.

“It is only by talking to others with RA that I got through those first few dark and difficult years. It was by listening to other people’s stories and experiences that I was able to figure out how to best manage the condition,” writes Moriarty.

“I feel very strongly that we need to raise awareness about this condition and get people to talk to each other and connect with others. It can be a very lonely place and just being able to talk to someone who ‘gets it’ can be incredibly helpful and consoling and informative,” she writes.

Grainne O'Leary and Sinead Moriarty 

Gráinne O’Leary, Chief Executive of Arthritis Ireland and Sinéad Moriarty pictured at the launch of My RA Story in the National Library. The book was launched by Sinéad.

 

The contributors to the book document the impact of rheumatoid arthritis on their lives, from the physical pain and fatigue to its effect on their mental health, relationships and careers. Some of those featured in the book have been living with RA for over 40 years, while others were diagnosed inside the last year or two.

Several of the contributors comment on the challenges of living with an invisible disease. Pamela Collins from Athlone writes that “It is difficult to see anything wrong with me, unless you see my scars from the surgeries over the years, or if you see me in the mornings/early afternoon or when my body has gone into full flare-up mode.”

Sandra Fitzgerald from Shrule, Co. Mayo was running her own successful business. ‘It’s one thing to walk away from a business venture that just didn’t work out, maybe you can take some solace in the fact that you gave it your best shot and took that plunge,” she writes, “But when your business is thriving and you’re at the point of being able to expand and explore the gazillion other ideas you have spinning around your brain until BOOM… rheumatoid arthritis rears its ugly head and reminds you of its presence in your body.”

There’s lots of hope and positivity in the book to balance the pain and anger. Triathlete, Ken Byrne, from Celbridge writes “I get emotional thinking how far I have come; believe me, it’s not been easy, it’s been filled with ups and downs, injuries, sickness, but would I change it, not at all. Finding this road has given me my life back.”

Rheumatoid arthritis affects 45,000 people in this country; 70 per cent of them women. Two thousand new cases are diagnosed annually; the vast majority of them when the person is in their 30s, 40s or 50s.

According to Gráinne O’Leary, Chief Executive of Arthritis Ireland, “The purpose of ‘My RA Story’ is to increase awareness and understanding of rheumatoid arthritis, of what it is like to live with this chronic condition with its invisible pain and life-changing impact.

“The book gives people a space to tell their own story, and what incredible stories these are; many are heart-breaking, yet they’re also full of wisdom and hope. That hope is so important, because this book, we feel, will be a valuable resource for people who are newly diagnosed with the disease and uncertain of what the future holds,” she said.

RA is an autoimmune condition, where the immune system aggressively targets the body’s healthy tissues and joints rather than germs and viruses. When this happens, the joints can become stiff and inflamed and cause pain.

Early diagnosis is key to better long-term outcomes. If ignored or left undiagnosed, RA can impact other organs such as the heart, eyes and lungs, and ultimately can increase mortality. While symptoms of RA can vary from person to person, the most common are pain and swelling in the joints, stiffness in the joints, redness, inflammation and fatigue.

“My RA Story: personal accounts of living with rheumatoid arthritis” is published by Arthritis Ireland and costs €15. It is available to purchase online here.

“My RA Story” is supported by a grant from MSD Ireland.

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