Health: Coping with an invisible illness

June Chivers.

June Chivers.

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FOR someone who has lived with a painful, chronic condition for years, June Chivers is surprisingly upbeat.

But that attitude hasn’t come easily.

It has been severely tested over the years, especially when she has encountered little understanding and even less sympathy.

“It’s a cruel illness because you are invisible and you are ignored,” she said.

“In the supermarket, a man rammed me from the back and said, ‘Why are you so slow?’”

“I have suffered prejudice with it.”

She’s also had cruel comments and the indignity of being moved out of the way while in her wheelchair waiting for her husband in an airport – so he didn’t know where she was when he returned.

June was officially diagnosed with fibromyalgia 14 years ago, though she thinks its roots stem possibly from childhood.

“In my early 30s I had a bad accident and that could’ve been the trigger point for it,” she said.

“For the last 25 years I’ve had a badly damaged spine.”

The 58-year-old was injured lifting a petrol lawnmower out of a car as part of her job working for the Probation Service.

She carried on working for six weeks until her injury was terrible, leaving her with both osteoarthritis and rheumatoid arthritis.

Her diagnosis of fibromyalgia came much later from her GP.

Fibromyalgia causes “a tremendous amount of pain” and fatigue. The pain can be felt all over the body and the illness can be associated with other symptoms such as headaches, sleep problems and irritable bowel syndrome.

June, who lives in Streethouse near Pontefract, says she was lucky – after her diagnosis she went on what was then an experimental programme for people with fibromyalgia at Pinderfields Hospital in Wakefield.

She also tried many other treatments.

“I tried so many drugs, right through to morphine, but that did not suit me.

“Then I thought that I had to take it in hand and stop with some of the medications because they were not helping.”

Instead she went on various programmes to educate herself and has relied on the unwavering support of her husband, Gordon, and her family.

After many years seeking out answers, a year ago she decided to set up a support group to help others find their way through the mass of information.

“A good friend of mine was diagnosed with fibromyalgia and I did not want her to suffer the way I had,” June said.

So Wakefield and District Fibromyalgia Support was born. It offers one-on-one support and help with everything from benefits to relationships and meets every four weeks at Streethouse Cricket Club.

“We are now coming up to 50 members in just less than a year,” June said. “The way it’s grown is brilliant.”

Not only has the group grown in size but also in recognition.

During a train journey, June was talking about her plans to mark Fibromyalgia and Chronic Fatigue Syndrome International Awareness Day.

Her idea to have a mini Olympics, and call it the Fibrolympics, was overheard by the man sitting opposite and they got talking.

He mentioned that she should get some recognition for her work with the group and gave her his email address.

It was only when June got home and looked him up on the internet that she realized he was Chris Holmes, a former paralympic swimmer with nine gold medals to his name and now director of paralympic integration for London 2012.

After he suggested she look into the Inspire Mark scheme, which sees projects inspired by the London games being given special recognition, June applied. The group is now eagerly awaiting news about whether it has been successful.

Yesterday it held its Fibrolympics, with the main event a game of Boccia, a paralympic sport which is similar to bowls but participants play from a seated position.

Tomorrow June and support group chairman Joanna Tolson will be at a Parliamentary reception at the House of Commons being held to mark the international awareness day.

The date coincides with Florence Nightingale’s birthday as the ‘Lady with the Lamp’ is thought to have suffered from fibromyalgia or chronic fatigue. She described enduring pain and tiredness for many years, including being bedridden for six years.

Next on the horizon for the group is a medical conference in September.

Meanwhile, June is delighted with its success and keen to reach more people struggling with the condition.

She said: “We will do anything to help people get to the support group.”

* More information about the Wakefield and District Fibromyalgia Support Group is at: www.fibromyalgiawakefield.org

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