It’s time to make hidden pain of fibromyalgia more visible
HAVE you noticed a post about a fibromyalgia petition doing the rounds on Facebook in recent weeks? If you have spotted it but weren’t sure what it was about, you’re not alone. It’s only a little over two decades since the condition was officially recognised and awareness around it is still relatively low (on average, it takes 10 years for people to be diagnosed with it). Symptoms can be vague and overlap with other things – pain and fatigue are the main ones – but it’s incurable and can be debilitating.
And this is what that Facebook post is all about. Leeann and Adrienne Lakin, sisters from Derbyshire who both suffer with the condition, launched a petition earlier this year in a bid to get parliament to change the Equality Act 2010, so that fibromyalgia is listed as a full disability.
Since being hospitalised with the illness early last year, Leeann, 29, has been unable to work and needs help managing day-to-day life and looking after her two young daughters. It’s similar for Adrienne, 24, who says: “I used to be a fit, active young woman working three jobs and constantly on the go, to now where I Experts think the majority of people with fibromyalgia still haven’t been diagnosed.
Abi JAckson reports on the Facebook campaign that hopes to bring about much needed awareness for this misunderstood condition can hardly do a simple task without the chronic pain, fatigue and the rest of the joys that come along with fibromyalgia.”
They’re not alone. Fibromyalgia affects around 4-5% of the UK population, however, as Dr Kim Lawson, a senior lecturer in pharmacology at Sheffield Hallam University – who has specialist interest in the condition – points out, up to 80% of sufferers haven’t yet been formally diagnosed. bETTER UnDERsTAnDinG THE condition is already mentioned in the Equality Act, but currently just as an ‘impairment’. Getting this changed, as Leeann and fellow campaigners note, is not about benefits or financial gain, but would be a vital step in furthering awareness and understanding of fibromyalgia – which would hopefully help towards speedier diagnoses, plus better advice and support for those affected.
These things can be hit and miss, for a number of reasons. Dr Lawson notes that the symptoms – as well as generalised chronic pain and fatigue, things like brain fog, stiffness, digestive disturbances, anxiety and depression and mobility issues are common – can be vague and “complex”, and “there isn’t a simple diagnostic test.”
And because it’s an “invisible illness”, meaning people with it can often ‘look fine,’ lack of understanding can be a source of distress. Symptoms sometimes get dismissed as being “in somebody’s head”. REAL iLLnEss DR Lawson agrees “recognition” is one of the major challenges of conditions like fibromyalgia. “It goes right across the board for people who have the condition; their direct relatives, their friends not recognising that they are ill.”
The fact there’s no clear cause plays into this, but research looking
at genetic differences and brain pathway alterations thought to play a role in the illness suggest “rewiring” in the pain response pathways produces abnormal responses to stimuli. FINDING HOPE WHILE chronic, things like cognitive behavioural therapy (CBT) to help develop coping strategies, being physically active and drug therapies to help address specific symptoms, can all help manage fibromyalgia.
Leeann and Adrienne have both had their homes adapted with ‘grab rails,’ to help with things like using the bathroom and stairs, and they use mobility aids - though on really bad days, they won’t be able to get out and about at all.
To date their petition has racked up 31,000 signatures.
“It’s time we made this ‘invisible’ illness seen,” says Leeann. “Because for those of us who live with these conditions, it’s our daily life, it never goes away.” VISIT facebook.com/fibroget intoparliamentmakeachange