‘On bad days the slightest move can cause anguish. I can’t speak and I can’t concentrate on anything’
The reality of living with ME, the disease doctors can’t diagnose
It started at the age of 10, when L.A. caught a common stomach bug. She began sleeping for 20 hours a day, waking up to be “violently sick”, then falling back to sleep. No one knew what was wrong with her, and she was diagnosed and medicated for countless illnesses she didn’t have. It wasn’t until she was 13, three years later, she was diagnosed with ME, myalgic encephalomyelitis – commonly known as “Chronic Fatigue Syndrome”.
L.A. Cooper is now a prominent activist and campaigner for ME Action Network UK, “for British patients to empower each other to fight for health equality”.
She told The Tab what it’s like to live with and fight an undiagnosable and incurable disease:
Explaining what it’s like to live with an incurable, untreatable disease that invokes such rife discrimination and mockery in the media and medical community is almost impossible. No matter how carefully I choose my words, how cautiously I construct my sentences, how eloquently I convey the pain of this, it’s virtually impossible for someone who hasn’t experienced it to truly know what having ME is like.
It’s riddled in my body. Every ounce of me is affected from my muscles to my joints, from my stomach to my reproductive organs, from cognitive impairment – particularly aphasia – to heightened sensitivity to noise and touch. A single tap on my skin can ache on the worst days.
The only way in which I can describe what having ME is like, is by trying to make you understand that I am in constant battle with my body. My spirit, my will, my mentality, my character, they all want to live. I want to live, but my body wants to destroy itself. It’s as though something has taken aggressive hold and the only way my body knows how to react is to shut itself down. Like an attempt to self-contain something deeply malevolent pulsing through my veins. And there’s not only nothing that I, nor the most expensive and qualified specialists can do. There’s also no way of knowing what form it will take next or how powerful it will become, leaving a grey smear in any thoughts of the future I have.
As a child, I was extremely athletic and I still love sports and activity. I joined my gym, I started running and weight training. A little over two weeks before my 10th birthday, my entire family came down with a virus, a really common stomach bug. By the Saturday night, everyone was getting better, and I was becoming steadily worse. On the Sunday, I was rushed to hospital in inordinate amounts of pain.
What followed for the next three years were some of the most difficult times of my life. I was in and out of hospitals, seeing specialists, being told that my tests were coming back irregular, that they could see I was extremely sick, that they didn’t want to send me home under any circumstances, yet admitting that they couldn’t detect what it was destroying my health. I was being juggled between wards, and I hardly remember anything outside of it all. I would be completely comatose for 20 hours a day, waking up to be violently sick, then passing out again. I went through numerous diagnoses, was put on medications for illnesses I didn’t have. Nothing worked.
When someone mentioned “Chronic Fatigue Syndrome” I thought it was another pointless diagnosis. Firstly, because pointless diagnoses are all I had known. And secondly, because, while the fatigue was prominent, it certainly wasn’t my biggest worry. The name didn’t fit. It sounded like something you’d have after an especially bad cold or bug, something you’d get over. What I had was insidiously strong. A few months after I turned 13, I was finally explained all the symptoms of “CFS” and it made perfect sense. It was then that I was introduced to the name “Myalgic Encephlomyelitis” or “ME”.
Going through my childhood, my adolescence and now living in my twenties with ME, I feel as though I’ve heard every cliched insult and misconception there is out there. One doctor told me that if I thought about the pain less, it would eventually go away. I was ten years old and curled on the GP’s office floor wanting to scream because of the pain. I had authority figures insinuate I was faking it all, that I wasn’t trying hard enough or that it was growing pains.
When I’m able to do something, many have treated me with suspicion and question me. When I can’t do something, I’m told that I can’t let my illness control my life. And truly, this is what stays with you.
Some days I can’t move my head, I can’t speak, my muscles have lightning bolts streaking through them. I can’t stand for the aching in my chest, the burning in my skin or the throbbing in my head. I bully myself – I lay in a dark, silent room, unable to do anything but think about how I can’t even control my own body. I think about how I push myself incessantly, how my expectations are too high and I need to make peace with the fact that whatever this is, it’s not going away anytime soon. And yet, the next time I can get out of my bed, the cycle starts all over again, and I find myself making the same mistakes which land me in bed.
I’m a young woman who wants to achieve, who wants to learn and grow, who wants everything my peers have. It’s a human trait to strive with everything you have. It’s just a shame the situation is so unnatural that it doesn’t always permit me to.
Like anyone facing that level of sickness, I visited practically every doctor I could. Some were kind and tried to understand, yet their education in ME was severely lacking, and there was nothing they could do. Others were mocking and hurtful, and believed the common misconception that I was over exaggerating, or a hypochondriac. Faced with no healthcare, no treatment and little compassion, I knew the state of things for people with ME had to change. And it was that moment that I became an activist.
There will never be a day where this doesn’t affect me, not while there’s no treatment and little reliable research in the UK.
On days I call “good”, my body feels heavy when I wake up. It’s difficult to walk and talk, and the slightest noise feels as though it’s banging inside my ear drum. After a few hours, I can study or work, I feel fairly cognitive and capable before an inevitable crash at 2pm, another lift an hour or so later, and an even deeper crash at 5 or 6pm. At night, I frequently struggle to sleep because of nerve and muscular pain, and my brain is wired, like it’s tumbling around.
I wake up frequently throughout the night and I don’t remember the last time I woke up feeling refreshed and energised. In many instances, sleeping can cause even more symptoms for me, but not sleeping can also have disastrous affects.
My bad days aren’t something easy to explain. It’s usually that I’m so riddled with muscular pain that the slightest move can cause anguish. I can’t speak and I can’t concentrate on anything, even pictures. But the worst aspect of it is I’m still awake. My brain is still going, and all you’re left with is your own boredom and repetitive thoughts.
As far as coping mechanisms go, I’ve heard some truly inspirational ones throughout the years, and I can say that I’ve tried them all. There is only one prescription medication I’ve found to take the edge off the pain, but unfortunately it interferes with other symptoms so I only take it when I’m absolutely desperate. Herbal solutions and holistic solutions haven’t given any relief, and while I enjoy doing yoga and swimming, they alleviate some discomfort for a short period of time before ultimately resulting in bigger and more painful setbacks.
— L.A. Cooper (@lacooperUK) September 27, 2016
It’s a somewhat cliched, boring solution, but positivity is the most helpful tool. I am naturally optimistic. I believe in the good of people and the intellect and drive of so many who do want to change the way ME is perceived and treated if they are given the chance. I remember that I have the support of family and many, many genuine, caring friends unlike many with ME that I know.
I am continually aware that I am still able to get out of bed most days, however painful it is. I remember that I am able to have conversations, eat some solid food, enjoy some music and sunshine. So many basic pleasures in life have been refused to people with ME because of the severity of the condition. And that is something that I am always thankful for. And every ounce of my being will strive for change for those who cannot.
The fundamental tools that many people with incurable diseases are given are completely unavailable for people with ME. I know parents who struggle to get access to mobility aids for their children with the disease, or even a good education. I know people newly diagnosed who have had to worsen their condition by taking tests that show numerous counts of “proof” that the diagnosis is real, in order to receive the dispensation they need from work.
I know people who’ve had ME for decades and have drained their bank accounts travelling to countries that offer some hopeful treatments because not only are they not available in the UK, there is nothing available in the UK. People who have been ostracised by their friends and family, and must now try and face this alone because of the incorrect information forcefully pushed out there. Everything needs to change.
We need tests and biomarkers. We need trials for drugs that, in some cases are showing full remission in patients in Europe (this is an anti-cancer drug and is proving very successful for so many). We need terms such as “Chronic Fatigue Syndrome” to be differentiated from ME.
It’s not just that we need funding for research (we do) or that we need our medical practitioners to be educated (we do), we need to start from scratch. Most believe that the defining symptom of ME is fatigue. It isn’t. The defining symptom is exertion malaise, meaning that the more activity people with ME do, whether that be cognitive or physical, the worse the symptoms become.
This has proven the most detrimental misconception, as in many illnesses displaying fatigue, such as depression, exercise can do wonders. Yet prescribing exercise for someone with ME is like telling diabetics to treat their illness with sugar. This means that there have been many instances, people with ME have claimed that while they walk into graded exercise therapy (the only treatment offered in UK) they have been wheeled out, some being permanently disabled from the exertion.
There is so little understanding of the core traits of ME, that individuals are forced to become their own doctors, their own scientists. Across the world, some 17 to 20 million (perhaps as high as 30 million) people are losing their lives to ME through degeneration of their bodies, complications or other diseases (it is highly common for patients to develop cancer) or suicide, which is highly prevalent after years of pain without care and isolation.
As strange as it seems, I’m not unhappy and I’m not depressed about my personal experience. I made a choice to use this disease as a way of looking at things differently. As a way of driving myself for change. As a way of becoming a more compassionate, understanding person towards others with physical, mental or emotional difficulties. I hope I’ve succeeded in that.
ME made me the way I am, and has given me an outlook that many are refused. The community is filled with inspiring, intelligent, kind, generous, giving people who are level-headed yet motivated to create a better world. My ME was like taking the red pill, seeing everything through new eyes, the beauty and the horror, and choosing to fight every day because and despite of it.
I can’t sugarcoat what has happened with this disease. What has been allowed to happen to people who never once asked for anything like this. Who’ve given their all as activists and often can’t continue in the level of pain they were living in. For decades, this has been brushed aside as the “yuppie flu” or (specifically for female sufferers) as hysteria. When the scientific evidence proves it is such as a disastrous disease, yet we have not moved an inch closer to finding a cause and cure. I can’t sugarcoat any of that, and I don’t want to.
All I want is my struggle to pave the way for generations to come, for little nine-year-old girls to not have to endure what I have endured. And if I can create change, even in a minute way, this journey will all be worth it.