‘It’s like someone beating you up’: The invisible illness no one’s talking about

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GEMMA FLOOD WAS in chronic pain for fifteen years before she found out why.

Over the years several doctors had tried and failed to establish what was causing the debilitating pain that had derailed her life.

After countless misdiagnoses, a doctor in Gorey finally discovered the truth: she had fibromyalgia syndrome.

Gemma recalls hearing the news six years ago.

“I hadn’t a clue what it was, I had never heard of it in my life … I couldn’t even spell it. I Googled it, that was very frightening. I was in shock for ages.

“I’ll never forget this to my dying day, the doctor said: ‘Gemma you won’t die of this, but you will die with this’.”

Gemma had to give up her job as a freelance journalist because of her condition. She has often ended up in tears due to pain and at one stage thought she was dying.

Very few people can work with it – the few people that do, do it with great difficulty. Many are striving to stay in jobs due to financial pressure.

Gemma said that it’s very difficult for sufferers to explain why they need time off work: “It’s such a mystery, it’s hard to explain to your boss. It’s not like saying you hurt your back or have asthma.”

Tired of feeling helpless, Gemma set up a support group for fibromyalgia sufferers in Carlow.

After the diagnosis I decided to stand up and be counted.

She chaired the group for five years before taking up an advocacy role and lobbying the Department of Health to include fibromyalgia on the long-term illness list and ensure sufferers receive a medical card or GP visit card.

Fibromyaglia Sufferers in Ireland made a submission to the Joint Oireachtas Health Committee on 6 December 2012. They have been unsuccessful in their efforts so far.

Gemma Flood1

Gemma believes if the syndrome was placed on the long-term illness list it would lead to much-needed research being done and the establishment of a national association that better links support groups.

‘Invisible illness’

She describes fibromyalgia as an “invisible illness” because people who have it often look as though there is nothing wrong with them.

Sufferers often have other health issues such as lupus, diabetes and depression.

Gemma found out that she had type-2 diabetes a year after her fibromyalgia diagnosis.

She knows at least three people with fibromyalgia who have died by suicide: “I don’t want another one.”

Last month she launched a booklet aimed at spreading awareness of the disease. It features the real life stories of fibromyalgia sufferers. Some 3,000 copies are currently being distributed nationally, and local TD Pat Deering has brought some to the Dáil.

Gemma has given up on conventional medicine, instead favouring reiki, meditation and reflexology.

The cause of fibroyalgia is unknown, but, in her experience, Gemma has found that it can be triggered by sudden trauma, stress or prolonged sleep disturbances.

Some doctors believe that people with the syndrome have a lower threshold for pain because of increased sensitivity in the brain to pain signals. There are 18 tender points on the body that are used to diagnose the syndrome.

There is no cure.

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The number of people who suffer from fibromyalgia in Ireland is not known but approximately 14 million people in the EU have the syndrome and 1-3% of the global population.

“It has no mercy on age, sex or profession,” Gemma commented.

Fatigue

Sufferers experience ‘pull the plug’ tiredness where they have virtually no energy to move.

Gemma said this is particularly difficult for people with young children. In fact, many sufferers put off having children as they fear not being able to look after them.

“You literally can’t go anymore, you just have to stop … If I don’t get my rest I’m done.

You can’t plan to go out. You could arrange to meet the girls but that night you could be flat on your back in pain.