Fibromyalgia: No one believed me when I was living in constant pain
Mary McCool
Amy
McLachlan's chronic pain first manifested while lying in bed one autumn
morning, when she discovered she couldn't move her neck or shoulders.
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 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 anti depressants 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. 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 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."
Greiving 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 a
greengrocers, and spent her evenings pursuing her career as a live
artist, which often involved pysically 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 house bound.
"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."
Fibromyalgia: No one believed me when I was living in constant pain
Reviewed by Admin
on
12:33
Rating:
Post a Comment