Tuesday, 12 May 2015

WHY ME / CHRONIC FATIGUE SYNDROME AWARENESS IS IMPORTANT


Despite having lived for almost two years with widespread pain and weakness that makes it difficult for me to pour a cup of tea or walk even short distances, I frequently feel overlooked when I visit my local doctors surgery.

Whilst living in the Outer Hebrides, my health steadily declined to the point where I was no longer able to work or look after myself. I was diagnosed with ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome). When I later moved back to mainland UK, registered at my local GP practice and explained this, I saw the look on the doctor's face turn from friendly interest to thinly veiled exasperation. With an eye-roll she asked "Who gave you that diagnosis?" and set the tone for a succession of dismissive encounters that would make me feel like a nuisance and a time-waster.

Very fortunately, after repeated requests, I was referred to a specialist ME/CFS service. Through this, I have been lucky enough to speak to a GP who works exclusively with ME/CFS patients. Having confirmed my diagnosis (by a process of elimination following blood tests and interviews), this doctor among other things said the following:

"I know it is a very real, physical, debilitating illness"

On hearing this, I burst into tears. Unlike on other occasions when I'd cried mid-appointment, my tears were not of sadness or frustration but of happiness and relief. Having my life turned entirely on its head by ill health had been hard enough without facing misconceptions about the legitimacy of my condition. I needed to hear those words far more than I'd realised. 

When I discussed challenging interactions I'd had with other professionals, the GP at the ME/CFS service explained that sadly my experiences are not uncommon. When even those with a special interest in medicine are ill-informed and harbour judgement, it is unsurprising that many others without medical training have the wrong idea of ME/CFS.

Having lived with the condition for what feels a long time now, I still struggle to get my head around it entirely so I don't blame others for their lack of understanding. I think most confusion about ME/CFS probably stems from its fluctuating nature and wide-ranging variability. While all sufferers have core symptoms in common (overwhelming fatigue that does not go away with sleep or rest, cognitive problems, flu-like symptoms following any form of exertion), the severity with which they experience them and the other symptoms that come alongside may vary significantly. Those mildly affected may be able to look after themselves but need time off work to rest. Those moderately affected may have reduced mobility and need some help carrying out day-to-day tasks. Those severely affected may be unable to feed themselves or sit up. Some have even died. Symptoms fluctuate across days/weeks/months, meaning that although on one day a sufferer may be able to do something, there is a high chance they will need days/weeks/months to recover from the exertion before being able to do the same thing again.  In short, no two ME/CFS patients look the same and how someone appears on any given day may not be indicative of their true level of functioning.

I am incredibly fortunate in that I have seen some improvement in my health. While I am still restricted and never escape the flu-like symptoms or 'so-much-more-than-ordinary-tiredness' fatigue, I am able to spend time with friends and am taking steps towards self-employment. Sadly, this is not and may never be the case for others. Some sufferers are confined to dark rooms for years on end unable to tolerate noise, light or conversation for even a few minutes at a time with those they love. This was reality for me for only a short time and just thinking about it fills me with overwhelming sadness. It felt bleak, lonely and terrifying. I hate to think of people suffering in this way, shut away from society's eyes, unable to speak up for themselves, facing stigma attached to a condition which has already taken so much.

Whatever its severity, ME/CFS is life-altering and debilitating. While not all sufferers have visible indicators of their illness, they have to work that bit harder to get through every day.

Ultimately, even the understanding doctor I spoke to was not able to offer a great deal that would help me as there is currently no cure for ME/CFS. While some treatments may help some sufferers, they do not work for everyone and it is more a case of carefully managing activity levels and symptoms. The knowledge that someone believed in the illness that had turned my life upside down though was some comfort in itself and I think its the very least all sufferers should be afforded. 

Funding for research is urgently required if ME/CFS patients are to see better outcomes so I will provide information about charities at the end of this post. However I appreciate that not everyone is in a position to donate. A major thing anyone can do though is gain a better understanding of the illness, affecting an estimated 250,000 people across the UK,  and share what they've learned with others.


M.E. / CFS Charities
The ME Association: http://www.meassociation.org.uk/
Action for ME: http://www.actionforme.org.uk/
ME Research: http://www.meresearch.org.uk/
Association for Young People with ME: http://www.ayme.org.uk/

My Jewellery Etsy Shop (all profits go to the ME Association):
https://www.etsy.com/uk/shop/frecklesandallshop

Videos about ME / CFS
Emma: https://www.youtube.com/watch?v=S5wj2B9PPzw
Meg and Hayley: https://www.youtube.com/watch?v=EYCS027EqA0

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