A hopefilled story about living with rheumatoid arthritis
Kinneavy has had this chronic autoimmune disease for more than 30 years and through her work with Arthritis Ireland, she has become a source of information and comfort to those more recently diagnosed.
Arthritis Ireland volunteer Claire Kinneavy is an excellent role model for people suffering from rheumatoid arthritis (RA). Kinneavy has had this chronic autoimmune disease for more than 30 years and through her work with Arthritis Ireland, she has become a source of information and comfort to those more recently diagnosed.
Earlier this month in Spain, she gave the keynote speech at the international launch of the largest patient survey to date of those with rheumatoid arthritis (see panel). Poignantly, she spoke about how at the age of 24, she got her first symptoms of rheumatoid arthritis.
“I was a healthy, optimistic home economics teacher, married for two years with a four-week-old baby,” she told the audience of RA patient organisations and health professionals at the RA Join The Fight for better understanding of rheumatoid arthritis campaign.
“At my son’s christening, I realised I was becoming more fatigued [than expected],” she said. “Later that night, I got stiffness in my fingers and fleeting joint pains – moving from my knuckles to my wrists, shoulders, elbows and knees.”
Within six weeks, Kinneavy was in hospital for tests to confirm her GP’s diagnosis of rheumatoid arthritis. “I began to wonder would I ever teach again? And, I asked an older woman in the ward with me, ‘How will I cope with this disease?’ and she said to me, ‘Keep doing everything you can’.”
“Most people said to me you look well. You’re too young to have rheumatoid arthritis so I felt guilty about that and overused my joints in the beginning.”
Kinneavy returned to work after her sick leave but had another severe flare-up of her condition after the birth of her daughter four years later.
“I had to stop teaching at that stage and soon afterwards started to volunteer with Arthritis Ireland.”
Some permanent damage was beginning to occur in her joints – particularly her elbow joint. “I had an elbow replacement at the age of 35 because the surgeon said if he didn’t replace it, it would fuse. It was at this time that I became really afraid of the disease and went for counselling to help me cope.”
She also did the Stanford Patient Management course in Arthritis Ireland, which she has since been leading for over 18 years.
“I learned it wasn’t enough to be optimistic,” she said. “I needed to learn to communicate better with my family and friends, with professionals and casual people I would meet. I needed to learn to explain how difficult it was to shake hands without pain. I needed to learn how to talk to my rheumatologist about my future.”
Kinneavy later trained as a master trainer in chronic disease self-management although she admits that “30 years later, it’s still hard to adjust to having the condition”.
“I still think I’m that home economics teacher whose middle name was efficiency. But, volunteering with Arthritis Ireland has helped to fill the void created by giving up my job.
“I love educating other patients about talking to their doctors.”
Over the years, she has had several surgical procedures including the replacement of several knuckles on her fingers and a second elbow replacement.
“Thanks to modern treatments, it’s now possible for rheumatoid arthritis patients to have good outcomes,” she told the delegates, many of whom, like her, had to adjust their lives to cope with this chronic condition.