Three weeks ago, I met the first doctor in 25 years to believe me. She is a gynaecologist and I went to consult her about my intense peri-menopause rather than my autoimmune condition. As symptoms overlap however, I had to explain my history. Dr A knew nothing about Myalgic Encephalomyelitis, but asked me to spell it for her and tell her about it. She was open to my knowledge, interested and supportive.
This experience of being treated with compassion and respect by a medical professional came as a profound shock.
How different my life might have been if it was always like that.
* * *
I was a girl from Coventry, UK, who never had a day off sick in 7 years at senior school. My dream was to do drama at college, but the drama that dominated my life there was not the thespian type I’d anticipated.
Snapshot 1990: The week after I get the damning results of my student union sexual harrassment questionnaire revealing the scale of date rape at Oxford University published in a national newspaper, walking through the quad, feeling like the stones themselves hate me.
Medical intervention 1: The doctor diagnoses glandular fever and EBV and recommends I drop out and do my finals the following year. I say I don’t want to spend a single second longer in that place than I have to, so will push on through. He shrugs.
* * *
Snapshot 1992: Halfway through the happiest year of my life, travelling through Asia, I’m sitting on a bed in a dodgy hotel in Indonesia feeling wiped out. All seven of us on the trek have been struck down by giardia. I am the only one who never recovers.
Medical intervention 2: After six months of diarrhoea, a battery of tests and a barium enema, the hospital tells me there’s nothing wrong with me besides IBS. This despite a baffling array of symptoms from purple lesions on my thighs to falling asleep at the table. I resolve to dismiss my unwellness the way the hospital has dismissed me: press on, ignore it and hope it will go away.
* * *
Myalgic Encephalomyelitis was first identified by Dr Melvin Ramsay following an infectious epidemic amongst 292 staff at Royal Free Hospital in 1955, mostly nurses. There had been other outbreaks, the most notable affecting 198 people at the Los Angeles County General Hospital in 1934 and 488 in Iceland around 1948.
In 1970, the year I was born, McEvedy and Beard, two male psychiatrists reexamined the Royal Free case notes and reported that “there is little evidence of organic disease affecting the central nervous system… and epidemic hysteria is a much more likely explanation…The data which support this hypothesis are the high attack rate in females compared with males” McEvedy CP, Beard AW. Royal Free epidemic of 1955: a reconsideration. BMJ. 1970 Jan 3;1(5687):7–11
McEvedy and Beard came to this conclusion without interviewing any of the patients themselves, many of whom remained too ill to work decades later.
* * *
Snapshot 1993: Standing crying outside the supermarket because I don’t have the strength to walk home with 2 bags of shopping. I’m 23.
Medical intervention 3: List of symptoms for my weary young GP: sleeping 14 hours a night; waking to find clumps of hair on my pillow; constant nausea and dizziness. Worst of all, can’t think straight; struggle to read, can’t write. When I say that I couldn’t get a lump of blu-tack off the wall yesterday because of the pain in my hand she takes a deep breath and says, with obvious reluctance, “I think you may have M.E.”
What? This was Before Google, so I went to the library and found a book, written by a medic with M.E. There it was: a comprehensive list of symptoms. I had every single one of them, even those I hadn’t realised were connected, like noise and light sensitivity. It explained that M.E. was characterised by ‘post-exertional malaise’, pain in muscles 24-48 hours after doing even light exercise. It told me that the only way to avoid it was to do half as much as you thought you were capable of. Except this was impossible, because your capacity and limitations shifted daily.
The book said 10% of post-viral fatigue patients recover spontaneously within a few years; those that don’t reach a plateau of symptoms between mild and moderately affected; about 25%, the severely affected, end up bedridden in darkened rooms.
Even though the prognosis was bleak, I was ecstatic. It was a huge relief just to know I wasn’t going mad and I wasn’t alone. But if this disease was already documented, why on earth had it taken 18 months for someone in the medical profession to mention it to me?
* * *
By some cruel twist of fate, the person most responsible for the gross misrepresentation of M.E. is psychiatrist Dr Simon Wessely, also a graduate of University College, Oxford.
Sir Simon Wessley took McEvedy and Beard’s patronising arrogance to the next level. Despite the fact that the WHO had formally classified M.E. as a neurological disorder in 1969, Wessley deliberately set about recasting M.E. as a psychosomatic condition called ‘Chronic Fatigue Syndrome’, a term adopted by the Centre for Disease Control in the US in 1988 following the Lake Tahoe epidemic of 1984 which affected 175 people in Nevada and infamously inspired the tabloid phrase ‘Yuppie Flu‘.
Throughout the 80s and 90s, the prevailing narrative was either that people with M.E. (pwME) were either whingeing workaholics suffering burn-out or lazy, benefit-scrounging malingerers. Of course if you were female (and the vast majority of us are) there was a third option that had been a stalwart since Victorian times: we were all hysterical hypochondriacs.
This brilliant summary of Dr Wessley’s contribution to M.E. research (or the derailing of it) by the heroic Margaret Williams is well worth reading.
TW: pwME may crash from sheer outrage. Here’s a sample quotation from Wessley:
“Most CFS patients fulfil diagnostic criteria for psychiatric disorder….Other symptoms include muscle pain and many somatic symptoms, especially cardiac, gastrointestinal and neurological. Do any of these symptoms possess diagnostic significance? The answer is basically negative…. It is of interest that the ‘germ theory’ is gaining popularity at the expense of a decline in the acceptance of personal responsibility for illness…. The description given by a leading gastroenterologist at the Mayo Clinic remains accurate: ‘The average doctor will see they are neurotic and he will often be disgusted with them’ ”
Psychological Disorders in General Medical Settings Ed: N Sartorius et al Pub: Hogrefe & Huber, 1990
“Not only has he consistently denigrated people with ME, but he has dismissed, ignored or ridiculed the substantial body of international biomedical evidence published over the last 30 years that proves him wrong… it worth noting that the Medical Research Council itself now acknowledges that there is evidence of immune dysfunction and inflammatory mechanisms in the brain and spinal cord of people with ME.”
* * *
Having mild M.E. is like living your life on a tightrope. You advance gingerly through each day, you look ahead constantly, you weigh your every step. One wrong move could take you down. You are forever dodging the curveballs being thrown at you: a virus, a period, a shock. It’s the ultimate balancing act.
Having moderate M.E. is living your life floundering in the safety net, trapped by pain, an infinite struggle to get back on your feet.
Severe M.E. is lying smashed and broken on the floor, forgotten in the shadows below.
The people watching only ever look up and see the tightrope walkers smiling effortlessly under the lights.
It doesn’t look dangerous.
* * *
The Wessely School’s blurring of the distinctions between people suffering profound fatigue and debilitation as a result of clinical depression and people with M.E., an organic disease resulting from a malfunctioning immune system, has led to GPs insisting on inappropriate and detrimental treatment advice.
Wessely-sanctioned Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) are the only treatments currently offered by the NHS to M.E. patients. Yet the results of the enormous PACE trial, published since 2011, ‘proving’ their effectiveness have been thoroughly discredited.
Super-heroic efforts of an international cohort of citizen-scientists led by Californian investigative public health journalist Dr David Tuller have exposed egregious scientific shortcomings and manipulation of results. But open letters 2015-18 to The Lancet and Psychological Medicine signed by more than 100 scientists and 50 ME charities from countries around the world asking for an independent reanalysis of the data have yet to receive a response.
Where CBT has shown to be ineffective, GET has proved significantly counterproductive in many cases, with post-exertional malaise triggering severe relapses. Unsurprisingly this has caused depression and despair for many.
Dr David Marks, Editor of the Journal of Health Psychology has concluded:
“The many wrongs committed by psychiatry and medicine to the ME/CFS community can only be righted when the PACE trial is ultimately seen for what it is: a disgraceful confidence trick to reduce patient compensation payments and benefits.”
As the Independent has noted in an excellent summary of the history of ME so far: “Throughout it all, patients were depicted as dangerous militants in the media for criticising the trial, even though they turned out to be vindicated.”
* * *
Snapshot 1994: Trying to fill in 45 page application for UK disability benefit. ‘Fit for work’ criteria: can you sit upright in a chair? Tick yes or no. No boxes to distinguish for how long, or if sitting up in a chair one day would mean you had to lie down the next. I give up. I’m too exhausted and overwhelmed to face the booklet, let alone a long fight for state support. My mom decides it’s time to send me somewhere warm to convalesce.
Medical intervention 4: My aunt in Johannesburg hasn’t seen me since I was 12 and doesn’t know me from a bar of soap. She is aghast to see me sleeping so much and takes me to her doctor, an overconfident man of 30 who doesn’t listen and proscribes Prozac. I refuse to take it. I know I’m not depressed – my body just can’t handle the twin challenges of a malfunctioning immune system and a cold climate.
South African sunshine saves me. The energy my body doesn’t squander on trying to stay warm it can put into building up my strength. Slowly but surely, I become more resilient.
* * *
Snapshot 1994: Sitting on the toilet seat retching from the effort of walking from bedroom to bathroom. What is going on? How can increasing my days working on a market stall from two to four a week have made me relapse to such a state? I can hardly stand upright, I’m in constant pain and a blurry haze. My throat feels like I’m swallowing through knives and I’m drenched in sweat whenever I get cold.
Medical intervention 5: The only way for me to stay in SA is to get a medical visa. As a condition of my application, I am obliged to attend a support group at the Chronic Fatigue Clinic at Groote Schuur Hospital in Cape Town. The fact that it takes place in a cold draughty room, on hard wooden old school chairs under harsh strip lights demonstrates the complete lack of understanding of the doctors convening it.
Sitting there, surrounded by other people patently way too ill to be upright, is sheer torture. We are coaxed to share our chronically confused stories so that the facilitator can confront our delusions. As my muscles go into spasm, I feel my energy ebbing away.
A two hour session in such cruel conditions lays me out for a week. It’s insanely counterproductive. As soon as my permit is granted, I gratefully stop going.
I don’t speak to a doctor about M.E. for the next 20 years.
* * *
Snapshot 1995: I am sleeping up to 20 hours a day. I have lost nearly a third of my body weight. My parents have to help me wash, and eat. I struggle to turn over in bed or lift a cup. After cleaning my teeth, I can’t use my arm. Occasionally my mind rises briefly from its zombiedom and looks around horrified, before helplessly sinking back down into brainfog so dense it’s almost suffocating.
* * *
Of the two years I spent mostly bedridden, I only spent 6 months ‘severe’. I am not qualified to describe how it feels like to live with very severe M.E. Rather read the devastatingly moving book A Girl Behind Dark Glasses by Jessica Taylor-Bearman, and marvel at the effort it cost her to share her experience with you.
Life with moderate M.E. – with apologies to those who have not seen Stranger Things – is like existing in the ‘The Upside Down’, that parallel universe to the bright sunny place where everyone else lives. You struggle relentlessly through a desolate, decaying, lonely wasteland calling out in vain to the people on top. They can hear you, but they can’t see where you are.
If you’ve met someone with M.E., they were mildly affected. ‘Mild’ M.E. is anything but. It means capacity is reduced by up to 50%. They might still work but not a lot else. They tend to cry off attending meetings and birthday parties. They are easily dismissed by doctors and ignorant comedians. Having mild M.E. is like being Lady Pole, in Jonathan Strange and Mr Norrell, condemned to a hidden double life in Lost-Hope, always exhausted and unable to explain it coherently to anyone.
It’s unlikely that you’ve met someone with moderate M.E. They rarely leave their houses, and if they do, they can’t afford to waste energy chatting.
You won’t have met anyone with severe M.E. They rarely leave their beds.
* * *
Snapshot 1995: It’s another Friday night. I lie on my bed in the darkened room and wonder when I will begin to despair. It has been 3 years since I fell ill. How am I ever going to get strong enough to get a job, meet a soulmate, have a baby? How long is it going to take?
* * *
In 2017, after 6 years bedridden, Merryn Crofts passed away 10 days after her 21st birthday. She lived in unimaginable pain and died due to infection arising from intravenous feeding after M.E. left her unable to swallow or digest food.
I beg you to read Clare Norton’s description of her daughter’s existence. She concludes: “what other illness gives the least attention to the worst affected?”
The first person to have ME on her death certificate, Sophia Mirza, died in 2005 after 6 years’ illness aged 32, when she suffered a massive relapse after being forcibly sectioned and locked in a psychiatric ward for 2 weeks despite the desperate efforts of her mother to protect her.
These words are from Lynn Gilderdale‘s mother Kay, a former nurse, who wrote this open letter following her acquittal of murder after assisting her daughter’s suicide in 2008. Lynn was 31 and had been severely ill since the age of 14:
“I wish with all my heart that I knew at the start of Lynn’s illness that graded exercise at this acute stage causes further damage. She could have been spared seventeen long years of unimaginable suffering if we had done the right thing at the beginning and listened to what she told us.”
In 2009, Dr Nancy Klimas, Professor of Medicine and Immunology at the University of Miami was quoted in the New York Times: “I hope you are not saying that (ME)CFS patients are not as ill as HIV patients. I split my clinical time between the two illnesses, and I can tell you that if I had to choose between the two illnesses I would rather have HIV.”
* * *
The most savage irony of all is that in 2012, Wessley was awarded the inaugural John Maddox prize for his “courage” in the field of ME/CFS and Gulf War Syndromes for “standing up for science”: “The prize rewards individuals who have promoted sound science and evidence on a matter of public interest, with an emphasis on those who have faced difficulty or opposition in doing so”
His courage in the face of all those pesky patient activists who, despite Wessely’s refusal to acknowledge the biomedical evidence of more than 6000 peer-reviewed papers over the last 30 years, continue to insist their disease is real?
This breathtaking hubris has exacerbated the suffering of hundreds of thousands of people, predominantly women and children, who have been forced into CBT and GET in order to access state grants and medical insurance, despite evidence that this therapy can significantly worsen their conditions.
* * *
I was so fortunate not to remain severe. I wasn’t regularly losing consciousness, needing vital signs or feeding tubes checked, so I could choose to exist without consulting doctors. Just about.
Medical intervention 6: I have zero confidence that the Chinese doctor my mom’s yoga teacher has insisted we visit will make any difference to my situation. Dr Lin’s bedside manner is non-existent and the acupuncture is excruciating. But there’s an immediate impact on my sluggish organs. As my Mom and the yoga teacher carry me out to the car, Dr Lin tugs my cardigan down over my ice-cold sweaty back. I feel his compassion.
I start going for needles 2-3 times a week and Dr Lin encourages me to learn T’ai Chi, a gentle way to stoke my energy and keep me limber. I attend my first lesson on an evening at the height of South African summer in a full length winter wool coat. I can’t stand for more than 2 minutes at a time. Slowly, carefully, I learn how to pace myself and build my wasted muscles back up without paralysing post-exertional malaise.
Snapshots 1995: The gratitude I feel the first time my parents take me to Noordhoek beach and support me to stand and breathe the wind. The pride I feel the first time I have enough spare energy to wash up after supper. The euphoria I feel the first time I drive out alone, to the local supermarket. I stand awestruck in the aisles and marvel at my freedom.
* * *
In 1996, when I got back on my feet, I felt like a rescued Thai child, miraculously released from the sunken cave. A part of me wanted to shout about it from the rooftops. But mostly my urge was to move on and never look back. I wanted to party. I wanted to travel. I wanted to have some fun before my 20s disappeared altogether. I didn’t want to talk about M.E. anymore. I wanted to live.
Snapshot 1997: I’m in love with a wannabe comedian who juggles at music festivals for a living. Our friends know I don’t drink and weirdly carry a tupperware of padkos everywhere, but they have no idea how compromised my health is. They only ever see me out at weekends, dancing, chatting. No one realises I spend the whole week in between lying down recovering.
I feel guilty about that now. What if I’d committed to consciousness-raising while I was strong enough to? If I’d focussed on that instead of starting a business and a family? But I needed to get independent, I needed to earn. And I was living in a developing country with far more pressing local concerns of mass poverty, drug addiction and domestic violence. What was the point choosing such a losing battle as chronic illness awareness? I rather fought where I thought I could make a difference.
* * *
Snapshot 2000: My 30th birthday. I’m functioning at about 60% of pre-illness energy levels and have my metabolic management down to a fine art. I maintain a stricter diet and more carefully calibrated exercise regime than many professional athletes; it just allows me to hold down a job. I work from home, and the role is far less challenging and less lucrative than my education prepared me for, but at least I can support my family.
People with M.E. are being persecuted by doctors, teachers, family members – the very people supposed to look after them. Imagine someone with late-stage cancer being told to pull themself together and stop pretending to be ill. Imagine someone with congestive heart failure being forced to do an exercise program to access state benefits. Imagine a diabetic child too sick to go to school being forcibly removed from home and put into psychiatric care. This has been happening to the chronically ill for decades. It’s happening now.
Snapshot 2001: My distrust of bullying doctors and dislike of exhaustingly overlit, noisy hospitals leads me to choose a home birth. I haemorrhage afterwards and need two transfusions a week later, but our baby girl is fine. My husband gets an hilarious comedy routine out of it.
Chronic illness is cruellest when it effects children. Before they get a chance to really stretch their legs or their brains in this life. M.E. is the leading cause of long-term sickness absence from school for both learners and teachers. Yet, thanks to Wessley’s biopsychosocial model, over and over again, children with M.E. are categorised as school phobic. Worse, their parents get accused of child abuse and Munchausen Syndrome by proxy, when all they are trying to do is protect them from harm.
The horror of this is so great it’s currently beyond my capacity to express it.
* * *
Of course, the big difference between now and 25 years ago is the world wide web. In the early 1990s, when I was first confined to bed, I felt so utterly alone. Now, the internet is the safety net for the massive spoonie community and no one with chronic illness needs to feel isolated.
I know post-Brexit post-Trump feeling is jaded and cynical about Twitter and the way it has empowered hate-mongering but to spoonies, social media is a vital source of loving kindness and life-saving empathy. It has transformed my experience of chronic illness. The flashes of recognition I get from seeing aspects of my daily reality mirrored by people all over the world are so comforting. It’s a joy to share symptoms and swap memes about brain fog.
I am so grateful for the perspective granted me by the extraordinary wit of grounded Dutch ballet dancer Anil van der Zee whose devastatingly understated one-liners should make him a YouTube megastar. The defiant pluck of Brit Stroopwaffle, who doesn’t have enough energy to swallow but determinedly blogs about access to plastic straws. Polyglot Nevra in Pakistan who is 23 and 34kgs but still made it to her brother’s wedding. The Swiftian brilliance of Australian Kaitlyn Plyley. And most exquisite of all: the diamond-forged prose of Jamison Hill as showcased in the New York Times.
These folk I have never spoken to directly and will never meet, understand aspects of my life more intimately than most members of my own family. They are companions on my journey. Their strength sustains me. Their humour and their grace hold me up.
They have taught me so much already; not least, to start taking this thing f’ing seriously.
* * *
Snapshot 2010: As I approach 40, I feel I’m on the slippery slope again. Even though I work mostly from home and mostly in the summer, my capacity is shrinking. I’m taking too long to do simple admin, I can no longer multitask and faciliating lays me out for days. It’s time to quit before I start letting my team down badly. But how can I survive without a wage?
* * *
Of course, the danger of the Instagram moment is that a snapshot in sunshine on a good day can completely skew the image of your chronic condition. We need to apply the radical self-loving spirit of campaigns such as Slumflower Chidera Eggerue’s #saggyboobsmatter. Like less-than-media-perfect bodies, people with chronic illnesses also need acknowledgement that their less-than-media-perfect lives can be beautiful. #saggylivesmatter.
We also need to be allowed to document the harsh realities without being censured for the modern crime of rejecting #positive thinking. Sugarcoating our experience for those who find it difficult to swallow does not help invisible illness be seen.
We must do it – to school doctors and policy-makers, to show solidarity with other sufferers and, most of all, to ensure the ‘mild’ know what they’re risking when they push their energy envelopes.
Not only do people with M.E. have a lower quality of life than MS, cancer and stroke patients, reduced life expectancy and higher rates of suicide, they tend to be treated like dirt by the medical fraternity. It is an insult to spoonies to suggest we are not thinking positively enough. We are by definition the optimistic ones, because we are still here.
Despite feeling like death every day. Despite constant pain, nausea, dizziness, brainfog and exhaustion; in the face of disbelief, ridicule and loneliness and without any effective medication or any prospect of it in the near future.
The people who deserve awards for bravery in the face of scientific controversy? All of us who Keep Chronic But Carry On.
* * *
Snapshot 2013: It’s our son’s 9th birthday. The house is rented and all our possessions are sold. Family Sampson hit the road in a 10 ton truck, aiming to drive Africa Clockwise. We are travelling with a kitchen and a bed in tow, so I can eat what I need when I need it and lie down whenever I have to. Fuel is free because we recycle waste vegetable oil. Neither the planet’s nor my energy is renewable. It’s time to wise up.
* * *
‘Chronic fatigue’ is a cruel misnomer – it’s not tiredness. It’s incurable exhaustion that feels like ‘flu-with-a-hangover-having-run-a-marathon. Daily. For decades. Best-selling author Laura Hillenbrand’s oft quoted simile sums up the impact: “Your tiredness to our fatigue is a match as to an atom bomb.”
It’s a disability almost impossible to imagine, even for ‘healthy’ disabled people. No one who’s not been chronically ill can possibly conceive of feeling this lousy for this long. That’s why people with M.E. reject the term CFS. Completely F**ked Syndrome would be more like it.
In 2018, having no energy is far more crippling than having no legs. Western society may have acknowledged the need to provide wheelchairs and ramps for the disabled, but there is no access to life for those of us who are moderate to severely chronically ill. If our society decided to banish those without working limbs to permanent exile in their bedrooms there would be an outcry. And yet this is the solitary confinement endured by those without a working metabolism.
Like Raquel Mesegeur, I dream of public resting spaces, Cloud-Spotter Cafés, with chaises longues for people with chronic illness or chronic pain. Where we could lie down without shame and use the saved energy to squabble over the social model vs medical model of disability…
Allies, will you join us?
In 2018, Jessica Kellgren-Fozard has said it is more socially acceptable to be gay than invisibly disabled. Our QUILTBAG comrades can march with Pride to demonstrate their solidarity. The chronically ill cannot. The empty shoes of #MillionsMissing are symbolic of our desire to stand up and be counted while underlining the impossibility of our doing so.
Allies, will you march for us?
We literally don’t have enough energy to complain about how our chronic lack of energy is not being taken seriously. Sister, if you’re exhausted from constantly being expected to explain systemic racial prejudice to white people who won’t listen, just consider how weary we become protesting to doctors who insist our neuro-immuno-fatigue is all in our mind, knowing the effort will paralyse us with PEM for days, weeks, months.
Allies, will you speak up for us?
Womxn, LGBTQIA and POC may empower themselves by deciding to save their energy and refuse to engage anymore with their ignorant oppressors. But most people with chronic conditions don’t have the luxury of that choice. We can’t choose to ignore the system we rely on to dispense medical care and state benefits. We have to humiliate ourselves before disdainful doctors every day.
Allies, when will you step up for us?
* * *
Snapshot 2014: Moving through life at my own pace is working well for me through 12 countries along the west African coast. I’ve even survived having malaria and typhoid simultaneously. But the Big Green Truck arrives in Liberia at the same time as the Ebola virus and we are forced to evacuate.
* * *
It is too easy to pour scorn on a spoonie. Combined with the lack of obvious physical impairment, our cognitive dysfunction and lack of emotional stamina make it hard for us to communicate our realities clearly and forcefully.
If #MeToo has taught us anything, it is that we must believe each other. I fear even spoonies will read my story and doubt it. But I need to hold my head up and trust that you will. Travelling Africa after all mostly requires the things chronic illness teaches us: how to be tenacious and stubborn and resilient. And patient.
While we wait and wait for M.E. research budgets to trump that of male-pattern baldness in US, we are praying that Prof Ron Davis and his team at the Open Medicine Foundation are blessed with swift success in his Big Data Study looking for the M.E. biomarker and evidence of a ‘metabolic trap’.
I tell myself that if we can make it round Africa in a 40 year old truck running on vegetable oil, anything is possible.
* * *
Snapshot 2015: I am back in bed in my mother-in-law’s house. It’s snowing. My first winter in UK for 20 years has triggered my most severe relapse. For weeks I watch the heart-shaped shadows from the net curtain move across the wall. I long to get back to Africa.
I get online to update myself about research and discover a) there still isn’t any happening and b) a young woman called Jen Brea has Kickstarted a documentary about living with M.E. I feel both scared and validated. I write a blog called ‘Press Pause‘ admitting the extent of my chronic condition for first time.
I find out that people with M.E. are more likely to die prematurely of cancer and cardiovascular disease. It’s hardly surprising when our bodies have been under siege from our immune systems for decades. I might have 20 years less than everyone else’s three score and ten, so I resolve to make the most of what I have left.
* * *
When I get my tattoo, it will not be the semi-colon of a mental illness survivor, but a pause sign (II) signifying my solidarity with the millions missing whose lives are permanently on hold due to Invisible Illness.
* * *
Snapshot 2016: Libya is too dangerous to cross so we are standing on the deck of a ferry taking the Big Green Truck across the Med from Morocco to Spain. When we left Cape Town, we thought it would take us 2 years to drive around the whole continent. What with losing a year to the Ebola pandemic and 16 breakdowns so far, it’s already taken us 3 years to get halfway. My daughter has grown too big for her bedroom and we’re going to have to find her a boarding school. But at least we’ve made it this far together.
* * *
In her opinion, said Dr A, there are three things vital to keeping well: supporting gut health, boosting the immune system and avoiding stress. She was delighted to hear I eat yoghurt daily and take probiotics and vitamin C; that I haven’t had gluten or caffeine or alcohol for decades; that I do T’ai Chi every morning, even if it is the only upright time I manage that day.
“But you’re doing so well!” she exclaimed.
It wasn’t until she said it that I realised it had never happened before. Dr A is the only person ever to acknowledge or congratulate me on my disease management skills: for working it all out for myself in my early 20s in the absence of any medical knowledge or care; for the careful calibrating of my life every single day since; for mastering as best I could the neverending balancing act that is living with chronic illness.
Looking into her beaming face, I found myself in tears.
I’d been braced for the usual disbelief, for that icy dismissive attitude bordering on disdain. Her warmth released a luxurious rush of trust and sense of possibility within me. With such an open-minded doctor at the beginning, I could have discussed difficult options, worked together towards understanding the vagueries of my condition, have had an ally in the strategic employment of therapies, one with a medical education and the capacity to skim research papers quickly and make informed calls.
* * *
Snapshot 2017: It’s our fourth week stuck in a garage in France and September is looming. I tell my husband that if we don’t get the parts we need soon, I am going to get ambushed again by a European winter. We’ve still got to drive across Italy and down the Adriatic Coast to Greece before we can cross back to the warmth of Africa. I beg him to get a move on and get us out of here.
* * *
The heroic efforts of dozens of patient activists over the last few years have emboldened me. Since Oscar-shortlised Unrest, film director Jen Brea has become the reluctant poster girl for M.E. and walks the TED talk from her wheelchair. Housebound Jenny Spotila keeps a sharp eye on NIH research budgets on our behalf. Cort Johnson reports back from conferences. Bedbound Tom Kindlon reads and distills the latest research. Hundreds and thousands of us who can’t do those things are eternally grateful.
We know that keeping up the momentum of consciousness-raising is dangerously depleting for individuals. Every year after the #MillionsMissing awareness campaign on May 12th, the entire M.E. community is on their back for a month.
A couple of weeks ago Jen Brea reflected heartrendingly on the infinitesimally slow pace of her progress. She was agonising about the eternal dilemma of having to choose between devoting precious energy to activism or creative endeavour: “I don’t want to be an activist. I have to be an activist.”
I long for Jen to get well enough to make more movies. (Imagine the dramatic Spotlight she could throw on a transatlantic cover-up of collusion between medical researchers, insurance companies and the institutions supposedly regulating them resulting in the protracted abuse of countless innocents. Starring Robert Downey Jr. as maverick journo Dave ‘PACEman’ Tuller, Hugh Grant as evil Professor Weasel plus Scarlet Johannssen playing Jen. And Omar 😉
But Jen recently had to have surgery for thyroid cancer and is battling to get her capacity back; in the last 5 years, through Unrest, MEAction and MEpedia she has led the mobilisation of a global movement and jeopardised her own health for the cause. She needs a break and pwME need to step up.
We must learn to share the burden, pass the baton, do shifts.
Luckily, we are legion.
Like a hydra we will rise.
* * *
Snapshot 2018: Since the relapse, every day is the same: the Sisyphean task of dragging myself up, doing Tai Chi and fuelling myself to lie on the bed and write for an hour or two. Thankfully my 14 year old son is now mostly homeschooling himself, because brain fog makes explaining his maths almost impossible.
It’s supremely frustrating that I’m six months behind in the travel diary blog. Whenever I start getting my balance back something knocks me down: through Egypt the cold kept me mostly bedridden; in Sudan I got typhoid and the meds knocked me sideways; in Ethiopia I was battling to breathe at altitude. By necessity, the story is becoming less about who and what we meet upon the way and more about my internal journey to the acceptance of a level of disability I had hoped I’d left behind long ago.
But I know how lucky I am to have even glimpses of the places the Big Green Truck is rattling through.
* * *
M.E. is more common than MS, Parkinson’s and AIDS put together. There are an estimated 15-30 million people with M.E. worldwide, with at least 1 million in US, 250 000 in UK, 560 000 in Canada and 100 000 in Australia. There are no stats for the countries we’ve seen on this journey. South Africa has the only M.E. association on the continent.
What about the rest of the world? A 2006 study found the prevalence rate of CFS in Nigeria was significantly higher than that of the US. What’s happening to those with invisible illnesses in invisible countries?
The history of AIDS activism can teach us a lot. In 1980s, HIV was stigmatised as the ‘Gay Plague’, but by the 1990s highest infection rates were revealed amongst heterosexuals in sub-Saharan Africa. Isn’t it just as likely our ‘Yuppy’ disease will be shown to be most severely impacting unemployed people of the the global south?
* * *
When I started writing this, the first line read “Yesterday, I met the first doctor to believe me.” It’s taken 3 weeks, my every capable moment, writing on my laptop while lying down. I am physically challenged by being too weak or too dizzy to sit up but the mental hurdles are worse. The. Interrupted. Thoughts float away from me as if being pulled out for the Pensieve by some malevolent wizard’s wand.
The impact of the cognitive challenges of chronic illness are perhaps the most underestimated. You become unable to follow a thread, to connect words to meaning. I have a degree in English from Oxford and – genuinely – I misspelled both the words ‘English’ and ‘Oxford’ while typing that. I was trying to say I haven’t read a book this year. I devote my mental energy to homeschooling and writing an account of our journey for my kids to remember it when I’m gone.
Being unable to express yourself clearly in a doctor’s room can be fatal.
* * *
People with M.E. get used to such a poor quality of life that we describe our health as “good” if it’s not dire. A good day for me is when I can think clearly enough to write without too much pain from typing the day before. A sudden slump, sore throat or painful glands is the red flag telling me I’m overdoing it. Through my 30s that was after a day at my desk, on the phone. In my mid 20s and now in my late 40s it could be from having a shower. To get this written, I’ve been taking one once every three days.
Still that’s easy compared to Mary Smith’s experience of taking a shower.
* * *
To adapt to chronic illness, I have simplified my life in every way I can. To save my ever-dwindling energy, I dispensed with a deadline-filled job, a house that always needed cleaning and a social life with friends. In order to nurture my family, I have reduced and refined my existence to the bare minimum of things I need to stay functioning: clean air, fresh food, happy kids. But still the walls of my limitations keep closing in.
I know my body very well and it’s feeling increasingly worn out. More and more often I wake gasping for air. My heart feels like it could seize at any time. The clamp on my brain stem is tightening. But returning to the state I was in 25 years ago has allowed me to appreciate the differences – despite greater physical challenges, I have far less mental anguish, more philosophical stamina.
The survival tactics spoonies adopt are good advice for all humans: try not to look back, only forward. Don’t think about the time you’ve lost, just about making the most of the time you have. Don’t dwell on what you can’t do anymore; focus on making the most of what you can. (The irony of forgetting the content of this paragraph twice in the writing of it, the enforced calm, the patience, waiting for the sense to float near enough back to me so I can make a grab for it and pin the meaning down. I can’t even work out if it is irony.)
On good days, by the beach, I bask in gratitude that my chronic condition allowed me to downsize my life and prioritise peace.
* * *
We are our own doctors. We have to be. As Jenny Spotila has said, all those of us disabled with chronic illness for more than a decade are PhDs in self-care.
It’s time to make the most of our best resource: ourselves. Let’s make MEpedia the biggest repository of global data on our condition and speed the work of the heroic few researchers on our side. Let’s all submit our medical histories so patterns can’t be ignored, post the strategies and therapies that have helped us. Let’s list the medical professionals who are sympathetic and blacklist the ones who aren’t.
Chronic illness veterans, carers and allies have to call Time’s Up on disbelieving doctors. We need to occupy their rooms with posters listing symptoms and a copy of Unrest and threaten to stay lying down on the floor until they watch it. We must insist that they listen. Because only #Spooniesplaining can stop their sheer ignorance condemning young people to lives in wheelchairs, condemning children to lives in bed and condemning parents to witness their unnecessary suffering.
We don’t want your pity; we demand your respect.
Medical intervention 7: Here in our second month on the Kenyan coast, at my ideal constant 27˚C heat, I am slowly pulling back to 40% upright. Next week, I’m doing a talk to Dr A’s colleagues at Mombasa Hospital. Posting this essay on the blog will save me explaining my M.E. history in detail so I’ve got enough energy left to answer questions.
* * *
Snapshot 2018: August 8th is Severe M.E. Day. It’s also our 20th wedding anniversary. I won’t be going out for a meal or a drink. I’ll be lucky to get out of the truck and walk 100m along the beach. But I’ll be feeling so blessed to be able to do that. Because I’ve been in the sunken place and I know that in comparison, this is paradise.
Sam Pearce has a Masters in Diversity Studies from the University of Cape Town and a PhD in Patience and Persistence from the School of Chronic Illness