Gemma Flood

Gemma Flood - We’re not invisible - so why should our illness be? Gemma Flood Turns Chronic Pain Into Power

Pregnancy and childbirth are typically a joyous occasion for most. But for Gemma Flood, 63, it was only the beginning of her journey with chronic pain.

After giving birth to a healthy baby Gemma recalled experiencing pain everywhere, and following numerous appointments with various medical professionals, she finally had her answer: Fibromyalgia Syndrome.

“When I was 29, my son was born at 12lbs by forceps - and that was the start of my pain. It was a real shock to my body. From then on all I felt was pain, pain and more pain. At the time I was working as a journalist and I was originally diagnosed with Repetitive Strain Injury because of my job.

“I went everywhere and spoke to everyone I could to try and get to the bottom of it. Doctors, physios and even chiropractors, and it was all making me worse. I remember I would come home from work, lay down and just start crying from the pain and stress of it all.

“My son was born in 1989 and I wasn’t diagnosed with fibromyalgia until 2008. It took 19 years for me to get a diagnosis. This came as a huge blow.

“I completely lost my love for everything and had to make the very hard and serious decision of leaving my job. I just couldn’t do it anymore and had to walk away from my journalistic career. That felt like such a huge loss which brought on another bout of grief.

“I wasn’t even sure what that meant back then. I went straight to Google and went into shock. It was so frightening.

“I remember it so clearly, the doctor told me ‘Gemma, you won’t die of this, but you will die with this”.

Fibromyalgia is a condition characterised by widespread musculoskeletal pain coupled with symptoms such as fatigue, sleep disturbances, memory difficulty and fluctuating mood. It’s thought to heighten painful sensations by altering the processing of signals in both the brain and spinal cord.

For many receiving an official diagnosis for a chronic pain condition such as fibromyalgia can be a double-edged sword, offering both reassurance and stirring up a complex mix of emotions, including grief. In Gemma’s case, she highlights the importance of letting yourself feel your emotions without self-judgement.

“It was a huge sense of relief, but with that came a huge sense of sorrow. I knew that my life was going to change drastically and I began to mourn for the person I once was. I was a healthy child, teenager and young woman. I had very little experience with medication and what it might do to my mind and body,” Gemma said.

“I set up a support group in Carlow and ran that for 5 years. During the course of this I discovered a huge need for someone to advocate on behalf of people with Fibromyalgia.

“There is a huge demand for people looking for help and support but are afraid of the system. I’m not afraid of it, so I became dedicated to helping others receive the support they are entitled to,” she said.

“I set up Fibromyalgia Awareness and Advocacy Forum working closely with the Department of Social Protection. During this time I joined Hope 4 M.E. and Fibro N.I. This was a turning point, where Joan McPartland, the founder member and I united forces.

“We produced four booklets. Three booklets called Fibromyalgia is Real editions one two and three. We then went on to produce Fibromyalgia and M.E. Facts, Fiction and Hope and finally Fibromyalgia and M.E. – Because we Matter.

“These tasks were very difficult, we had to fund raise, we had to feed the copies of the booklets down through the system, but it gave me a new purpose. We sent them to libraries, GPs and patients. The booklets are simply written with some true life stories. They were met with huge demand. This was an example of patients helping patients.

Sadly in 2022 Gemma was diagnosed with Osteoarthritis and a bulging disc in her neck which again came as a huge blow.

“Even with hobbies - I love to garden but I just can't do it the way I used to and learning to pace myself has been the biggest learning curve. I know now that it’s important for me to take an hour or two out of my day to just sit or lie down - if only I knew that then!

“Along the way, I noticed that a lot of people were finding the medication side of the condition quite difficult. From the way medication was being treated as a one-size fits all solution to the nasty side effects of brain fog, fatigue and weight gain, all of which are either already symptoms of fibromyalgia or can only worsen it.

“Even in my own experience with the medication - I’ve been a recovering alcoholic for 28 years now and with the way they were making me feel I was terrified of cross addiction.

“It’s so important for medical professionals to recognise that medication works on a case-by-case basis, but when so many people are coming out with the side effects that are impacting their quality of life - it must be recognised and listened to”.

“The whole picture was not being looked at. Some medical professionals will take on board what patients are telling them, but a lot of the time it depends on the individual to do the research on fibromyalgia and explain it to them.

“As I mentioned earlier, medication is a major issue. More often than not it negatively impacts mobility, the brain and therefore pain. These are character changes - medications change people. I ended up writing reams and reams to the Minister for Health in Ireland and even managed to get a petition in front of the Irish Government. The then Head of the Joint Oireachtas Committee on Health agreed with every single point I made and yet nothing was ever done.”

However, through the pain and negativity clouding Gemma’s life, she has found a positive, nurturing environment with people who understand exactly what she’s going through.

“Remaining positive is probably one of the more difficult aspects of a chronic pain condition, but it’s also one of the most important. One thing that really gets me through my bad days are distractions.

“Joan advised me to join Hope Crafts and I honestly cannot say enough good about them. I was on the edge of despair. I couldn’t craft to save your life, I was always either reading or writing. But I went joined anyway and I’m so grateful that I did. It’s turned my life around. Even having small, manageable goals each session has been amazing when it comes to pacing - and it really gets you using your brain,” Gemma explained.

“Hope 4 ME and Fibro and Hope Crafts have brought me a long way. It’s brimming with wonderfully talented people, who are hilarious, loving and so incredibly caring. I really can’t speak more highly of them.”

Despite the 63-year-old’s hardships, Gemma has remained committed to bettering the lives of others diagnosed with fibromyalgia and chronic pain conditions. At the heart of her work she reiterates that knowledge is power - so keep talking.

“Fibromyalgia is real. It’s not something we would have wished upon ourselves and it has no respect for who you are, were or who you will become.

“Keep talking. Keep expressing how it impacts you and how you’re feeling to your medical professionals, they must listen.

“And remember - we’re not invisible, so why should our illness be?”

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