This week is M.E. Awareness Week, culminating in M.E. Awareness Day on Sunday, (Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome/CFS; although, that name feels a bit like calling a flood a ‘chronic puddle’, but that’s a debate for another time).
I was going to let it pass by without saying anything. I worry about people getting the wrong impression and thinking I’m in need of sympathy or am unhappy with my lot, when that couldn’t be further from the truth. I love the life I have and am eternally grateful for it, but that doesn’t mean there aren’t difficult parts. Everybody has some form of challenging circumstances to deal with, mine just happens to be called M.E.
I also always feel a level of guilt on awareness days/weeks. Partly, because there are so many other life-altering conditions just as deserving of support and research towards treatments, and it feels like I’m ignoring them by fighting for my own, as well as guilt that I’m not doing more to contribute to the campaigns, that I’m allowing others to use their precious energy to advocate for mine… Basically, I overthink it all!
There is something more important than my uncomfortableness though. Something M.E. still desperately needs… Belief.
How do you attract funding for biomedical research into a disease which some medical professionals *still* say they don’t believe in? (Despite it being classified by the WHO as a neurological disease, and rendering those diagnosed, ineligible for giving blood…)
So, this is my attempt to make a ripple in the ocean of stigma and misinformation surrounding M.E.
A disease which affects an estimated 250,000 people in the UK alone, including children as young as 5. One which fluctuates from day to day and from person to person, but even in its so-called mildest form, causes a substantial loss of physical and cognitive functioning, and at its worst, leaves people paralysed and confined to dark rooms, unable to tolerate light, sound, touch or movement, or even steals their lives completely. A disease which is the biggest cause of health-related long-term school absence and has prompted parents to be investigated due to unfounded accusations of fabricating or inducing their child’s illness.
I have been incredibly lucky with the medical professionals I have met. Only once, many years ago, have I experienced disbelief and ridicule; but access to decent healthcare shouldn’t be a postcode lottery.
I wrote the following poem last year, to try and tackle the common misconception that M.E. is just tiredness. A harmful view which disregards the fact that although chronic fatigue is a symptom, it is only one of many, as this is a multi-system disease, that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems.
I’m tired. Just so tired.
I’m tired of being tired.
I’m tired of being much more than ‘just tired’.
I’m tired of replying, “Good, thanks, you?”,
Hoping, someday, this tale might be true.
I’m tired of my smile being mistaken for recovery,
Embracing positivity, does not erase a disability;
My body is at war with an invisible force,
Battling bone-crushing exhaustion, no amount of rest can cure.
I’m tired of the pity,
And worse, the exasperation,
As if my chronic illness has outstayed its welcome,
Like I could tell it to leave, if I were that way inclined;
But I’m not in control.
I’m tired of not being in control.
I’m tired of the fleeting thought of regret,
As I share an achievement and anticipate, “so are you better yet?”;
I’m tired of never being able to answer, “yes”.
I’m tired of relapsing, accepting and adapting,
Observing life through double glazing,
Craving the underrated gift of active participation.
I’m tired of the pain reaching further than me,
Shrapnel piercing my loved ones, with alarming accuracy.
I’m tired of the strain this disease puts on my parents,
No one told them their roles would one day change to carers;
I wish I could spare them from this misery,
If only they resided in the ‘blissfully ignorant’ category.
I’m tired of my health being the subject of discussion,
People once held dear, accusing me of lacking motivation.
I’m tired of the government, the media and certain medical professionals,
The disbelievers, self-appointed experts and the downright disrespectful,
And the phrase, which slips out, of a venomous mouth,
“Everyone gets tired”, accompanied by raised eyebrows and doubt.
But I’m never ‘just tired’.
I wish it were that simple.
‘Tired’ doesn’t begin to cover all the debilitating symptoms.
I want to thank you for reading this post. It was, quite frankly, pretty terrifying to share, but if it has made just one person more aware and slower to misjudge, then it’s worth it.
I am extremely privileged to have a brilliant support network, parents who can take care of me both physically and financially, access to any aids or adaptations I need to make life as accessible as possible, and knowledgeable, compassionate health professionals. All of which have, no doubt, contributed towards the improvements in my health over the years. I want to use my voice to help the many others who aren’t as fortunate; the tide is definitely turning, but it’s still got a long way to go when it comes to health equality. It’s my hope that one day, nobody with this condition will ever hear the words “I don’t believe in M.E.”, especially from their doctor.
What can you do?
If you’ve got this far and are now wondering what you can do to help, this blog post by Pippa at Life of Pippa is a good place to start. If you’d like to learn more, or donate towards the educating of medical and other professionals and the funding of biomedical research, please visit the charities I have listed at the bottom of this post.
Or, if you would like to know more about what it’s like to live with M.E., Anna at M.E. Myself and I and Jessica at JayTay, amongst many others, provide very well-written, honest and informative blogs on the matter. Jessica has also written a book called A Girl Behind Dark Glasses, giving an insight into the world of some of the most severely ill people, one which most of us will, thankfully, never experience. It’s very well worth the read, plus, you’d be supporting the career of a new author!
I am also always happy to answer any questions you may have, so please feel free to leave them in the comments below or contact me directly.
Just one last thing, if you are a teacher or have a connection to the education system, please check out this article on how children with M.E., and other complex, chronic health conditions, can be better supported by their schools.