M.E. Awareness Day | Batteries Not Included

Today's post is a little different, it's M.E. awareness month so today is all about learning more about it and raising awareness of an often extremely misunderstood condition. So today I've opened up the stage to someone who has knowledge and experience of the condition, below is an incredible piece of writing by an M.E. sufferer that I'm sure will open up your eyes as much as it did for me.

Batteries Not Included by Louise Stark

I have no idea if I would believe this illness if I didn’t have it myself. M.E, Chronic Fatigue Syndrome, Systemic Exertion Intolerance Disease, Immune Dysfunction Syndrome: it’s an illness that can’t even agree on a name, let alone the cause so a cure is a long way off. Despite first recordings of the illness being as early as 1681, under the then name of Muscular Rheumatism, it is an illness we are only at the very beginning of understanding. It’s been referred to as hysteria, called yuppie flu and many sufferers have at one point or another been told something similar to ‘it’s all in the mind, you should push through it’. The debate still rumbles on as to whether it’s a physical or mental illness, meaning sufferers spend years being passed along the NHS conveyor belt, ruling out everything else, and indeed everything that has undisputed scientific evidence of existing, before being diagnosed on our symptoms alone. There is no laboratory test that can back up our claims so it can feel like it’s our word against everybody else’s, whether that’s our GP, hospital consultants, occupational therapists, benefit assessors or family and friends.

'It can feel like it's our word against everybody else's.'

It is an illness that doesn’t make sense and can feel so different for each individual sufferer. For me, the main and overriding symptom is debilitating fatigue to the extent where it can feel as if parts of me are paralysed. I cannot necessarily stand, walk or lift a cup of tea when I want to but instead when I am able to. This can mean it can take days for me to save enough energy to shower but what I find worse is how suddenly my battery can go from full to empty, tricking me into doing an activity and then leaving me with not enough energy to complete it, whether it’s getting dressed or walking to the post box: a highly inconvenient, sometimes embarrassing and always humble experience. Other symptoms I have are an inability to control my body temperature, a burning sensation in my spine, which feels as if someone is running disinfectant through it, general aches & pains, nausea, heightened sensitivity to noise and light, numbness and tingling in my hands and feet and what I refer to as my ‘cotton wool brain’, where I have trouble processing verbal information and finding the right words to reply. This is in no way a fully extensive list of symptoms for the illness as each person is different, not only in what they experience but which symptom is the main one and for some, ironically, this is not the fatigue. Hence why the name Chronic Fatigue Syndrome is hotly disputed and M.E is preferred which has led to the popular amalgamation of M.E/CFS although many feel this still does not reflect their illness accurately.

For me, this is the second time I’ve been on the M.E/CFS rollercoaster, the first aged 13, it lasted throughout secondary school and was carefully managed at college before disappearing and allowing me to travel, go to University and enter the world of work. But 4 years ago at the age of 31 it resurfaced. I’d like to say it’s been easier the second time around but in many ways it’s been worse. I have real grown up responsibilities now, like rent and bills and I’m more aware of the stigma and prejudice that is evident in the medical profession, media and society. Fatigue seems such a mundane term, ordinary, an everyday occurrence; who doesn’t get tired? But the fatigue I experience isn’t tiredness; it’s utter exhaustion, as if I have climbed Mount Everest before tackling breakfast. Every task takes at least 4 times as long, is broken down into bite-size sections and requires an extensive rest period afterwards, leaving me with little to show for my day. Instead of trying to jam-pack my day with a 4 hour commute, a day’s work and gym in the evening, now it feels like I’m playing a relentless and cruel version of the childhood wire loop game with much harsher punishments. Every time I do too much, every time I touch the wire with my loop, whether it’s simply by drying my hair or doing something much more exuberant like attending a family wedding, it’s not a buzzer that goes off or a mild electric shock, but a worsening of my symptoms which lasts for hours, days or weeks depending on the energy debt I have accumulated and how much pressure I have put my body under to ‘perform’.

'The fatigue I experience isn't tiredness; it's utter exhaustion.'

I can go from enjoying chatting with friends to in the following hour being unable to move around my flat, walking as if I am wading through thick treacle, the curtains drawn because the light hurts my eyes and feeling as if every cell in my body is angry at the cell next to it. But I feel I have to take these risks on occasion and accept the payback because being ill for years isn’t the same as being ill for weeks, where you can put your life on hold while you recover. It’s incredibly lonely and isolating, and depression can easily become a secondary condition. Every outing or moment of normality I have restores some of my confidence, it makes me feel like me again and whilst at a detriment to my physical health it is vital for my mental health. But the hidden consequence of playing the game this way is to the very perception of M.E/CFS, that needless burden I carry around. By people only seeing me on my good days I fuel the stigma. By avoiding my plug being pulled out in public, or when with people who don’t know me as well, I stop people from seeing the real M.E: the debilitating exhaustion and pain that suddenly takes hold. For that coffee and cake, that lunch with friends becomes the face of M.E and so my public persona facilitates an iceberg, hiding 80% of my illness below the water line and manipulating a terribly misrepresentative account of what lies ahead. So, I hold two contradictory truths in my hand, the public and the private, feeling defensive of both and hoping that it will one day be understood how and why each cannot live without existence of the other.
Personally I don’t believe that M.E/CFS is fundamentally a mental illness, but I do believe it can play games with your mental health, not helped by the fact that the illness currently resides in a vacuum of scientific understanding and mental health approaches to M.E/CFS are the only ones widely reported. With medical science and society still to catch up, in the beginning of this relapse it was very easy for me to blame myself, to think that I must be making it up: maybe I didn’t like my job as much as I thought I did? Maybe I was avoiding something? What was worse was this ‘made up’ illness was now putting strain on others, I was responsible for making their lives worse and my self esteem, self belief and confidence shattered. But despite numerous self pep talks (and unfortunately one from a hospital doctor) no amount of ‘mind over matter’ would get me dressed, showered or on that train to work. I could not ‘snap out of it’ for it is my body that decides whether I can do something and like the computer in Little Britain, it often infuriatingly simply says no, it cannot be reasoned with. Instead I’ve had to learn to adapt and ask for help, whether it’s from people or devices, which was not an easy thing to do. I found myself aged 31 with a flourishing career in the film industry, hardworking and independent in equal measure, suddenly needing help to wash my hair. But somehow the game of ‘how can I get through today on 7 amps of energy’ became too important not to get right. I couldn’t keep focusing on self blame or trying to discover the cure for M.E with copious amounts of internet research. The day to day reality of life with M.E had become my life and it was unforgiving; if I got the maths wrong I would be punished, bedridden for weeks. So I had to choose to believe me, I was my own expert and slowly I started shifting my focus to making each task as energy-efficient as possible, whether it was through the art of delegation or by using an appliance like a stool for the shower or a mobility scooter when out. As the years have rolled by these approaches have meant that my life hasn’t been all doom and gloom, I’ve had the energy for the fun stuff by being able to save energy elsewhere and re-designate it, micromanaging it for the precious resource that it is, as if water in a desert.
'No amount of 'mind over matter' would get me dressed.'
For many sufferers, reprieves from the condition aren’t possible. The scale of the illness is vast, both in terms of how the illness manifests, the degree of severity and also longevity. Some sufferers are so debilitated by the condition that they are bedridden for years and fed through a tube whilst others can work or study, though perhaps only part time. Some sufferers have the illness for months, others decades and it is not yet known why some are more severely affected than others. Similarly there is a vast array of treatment options for those who have the finances to do so. Whether it’s oxygen therapy, the Perrin Technique, acupuncture, hypnotherapy, Cognitive Behavioural Therapy, the Lightning Technique, the paleo, vegan or juice diet, intermittent fasting, nutritional supplements or the heavily disputed Graded Exercise Therapy, which despite poor research protocol managed to slip through the net as a NHS approved treatment for years despite evidence that it exacerbated people’s symptoms. A quick google search will lead to positive testimonies for each saying that it helped manage if not improve people’s health, sometimes to the point of a cure. So what makes us all so different? If it’s the same condition, surely the treatment should be uniform? Unfortunately this only fuels the debate over what the illness is and whether it really exists plus with so many treatments available to try, the implication is if you’re still ill then you haven’t chosen the right one.
Living with this condition has been a minefield, there are so many aspects competing for my attention, understanding and self compassion. It’s an illness suffocated by stigma, only finding space to breathe in a darkened room behind closed doors, where it is understood by the minority, that immediate circle of care, love and support. It’s taken me into the previously unknown grey area of disability where I bump up against people’s prejudice and preconceived notions of what disability looks like. There is nothing to see, no missing limbs, but it is an illness which in its own inconsistent and terribly frightening way disables me from doing everyday things and in doing so puts me on trial. It demands that I defend myself which can be even more relentless and draining than the illness itself. When I put myself in the shoes of the non M.E sufferer I understand, I see where they’re coming from, I can comprehend why they may think I’m lazy or attention seeking because I’m asking them to understand something that doesn’t make sense and can’t be seen. I hope one day people will be able to do the same for me, to understand where I’m coming from, to believe me and more importantly believe in the M.E or whatever it is calling itself by then.

You can find more information about M.E., as well as support, on the Action For ME website.


  1. I really know hardly anything about M.E. (I didn't even know that it wasa sometimes called Chronic Fatigue Syndrome, that they refer to the same condition). This post has really made me more aware of what's involved - thank you

    Steph - www.nourishmeblog.co.uk

    1. Really glad this post has made you more aware! x

  2. Thanks for an informative, well-written article

  3. I often struggle when trying to explain this illness to others. But you have done this so well. Thank you. X

  4. A very well written description of ME and the dreadful effect it has on our lives, thank you you for the effort you've taken to write this great article xx

    1. Really beautifully written isn't it, I completely agree x