Fibromyalgia: No one believed me when I was living in constant pain
Her GP, puzzled, prescribed codeine for the sensation, which was expected to fade with rest.
The ache persisted and spread down her spine into her hips, slowly inflaming the entire right side of her upper body – this was fractured with sharp, electric stabs from her spine to her foot around five times a day. After six months of living in discomfort, no doctor had any conclusive diagnosis. Instead, Amy got a pat on the leg, and was told perhaps she wasn’t “coping very well”.
Her body was failing her, but constant questioning over the nature of her “invisible” pain made Amy feel like her mind was on trial. Eight months, at least four doctors, and several rounds of acupuncture later, a rheumatologist at Stobhill Hospital confirmed Amy had fibromyalgia – a chronic condition causing widespread pain and tenderness all over the body.
Now, Amy, an artist based in Glasgow, is building a global network for women who feel neglected or overlooked by health care systems, where they can share their stories and research on a range of illnesses.
“I had to fight to get them to understand that I was in agony every single day,” said Amy. “When I spoke to a physiotherapist about the symptoms, it was like he just wasn’t taking it in.
“I don’t think that was intentionally biased, but there was the undertone of ‘you’re not handling it well’, which was difficult.
“There’s an implicit bias based on the understanding that women are physically weaker and might not handle the pain as effectively.”
Femme Fatigue is an online resource, a “library of experiences for progressive health care” aimed at patients and medical professionals alike.
As well as her own GP, Amy saw a physiotherapist and a back specialist through Greater Glasgow and Clyde health board, before she met her rheumatologist, who she describes as “amazing”.
But she largely felt unheard by doctors who were confronted with her condition and thought it “bizarre” that she was taken more seriously when her partner was present. “They took my word almost because he was there, verifying it,” she said.
Immersing herself in learning about gender bias in medical care, Amy was baffled to read about clinical trials that had significantly underrepresented women because of their biology.
While she continued to see her GP, the 29-year-old pushed for other avenues of support, including sessions at the Centre for Integrative Care, though Greater Glasgow and Clyde health board.
She also found backing from her MP John Nicolson (East Dunbartonshire), whose partner also lives with fibromyalgia, and who has called for better understanding of the condition across all health boards.
He said: “I think the condition isn’t well enough known. In the past, there was a tendency for doctors to assume it might be psychosomatic. Fortunately, that misunderstanding is now rare. And while the medical profession has yet to discover the cause of fibromyalgia there is widespread recognition of just how debilitating it is.
“It may seem really simple but I believed Amy and that can be a tremendous relief to people who are so used to dealing with scepticism and disbelief.
“Health boards must make sure that NHS personnel know what the condition is, and are able to identify it when patients present with the symptoms. They must also make sure that doctors are aware of the current treatment (often antidepressants prescribed for their muscle relaxant side effects).”
How are chronic pain patients helped in Scotland?
As part of a partnership with the Scottish Government, Alliance Scotland members run three fibromyalgia-specific support groups across the country. The alliance is the national third sector intermediary for health and social care organisations.
Meanwhile, independent support groups are emerging, such as Affa Sair established in Moray in 2015, whose monthly meetings are supported by NHS Grampian.
But charity bosses have called for a “shift in a relationship” between chronic patients and health professionals, as research shows how increasingly common fibromyalgia has become (one in 25 in the UK affected).
Alliance Scotland chief executive Ian Welsh said: “Recent health and social care policy in Scotland highlights the need to move away from the outdated ‘doctor knows best’ culture to one where people accessing support and services and health professionals can combine their expertise and be more comfortable in making shared decisions.
“While this is an ambition that we wholeheartedly support, this [Amy’s] example highlights that it is yet to become the reality for the all of the 4 in 10 people in Scotland who live with at least one long term condition. Achieving this fundamental shift in the relationship between people and professionals in practice will require a sustained commitment to supporting new approaches, roles and skills.”
Grieving the life I once had
Dealing with fibromyalgia has been a difficult transition for Amy.
At the time her pain first appeared, her body was strong. She was used to hauling 25kg sacks of potatoes every day while she worked at greengrocers, and spent her evenings pursuing her career as a live artist, which often involved physically demanding endurance work.
She now walks with the aid of a walking stick and has gone on to develop Hashimoto’s disease, an autoimmune disease where the immune system turns against the body’s own tissues.
“It has definitely impacted my self-esteem,” she said. “I had to leave my job in March 2015, and for most of that year, I was pretty much housebound.
“I couldn’t go out to see my friends and I couldn’t walk to the shops – that was really tough. I’ve always been a ‘do-er’ so enforced relaxation was frustrating – which is the main emotion I’ve felt in the past couple of years, just total frustration.
“I’m grieving the life and abilities I once had, I wish I had done a lot more back when I could.
“That’s why I wanted to set up this project, to have a place for women to go and even if they didn’t want to chat, just to go and read people’s experiences and feel like they’re less alone or that they’re not going mad.”