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4 hours ago
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At the Croydon secondary school I attended in the late 1990s, the deputy headmistress was a stocky woman with a military haircut who patrolled the corridors in voluminous outfits patterned in shades of brown. The outfits were much discussed, not charitably, by the teenage girls in her charge – as was her voice, which made you think of a blunt knife being drawn across a rough surface. Thirty years later, I can still hear that terrible voice refer to my “mystery illness”. In truth, the deputy headmistress never actually spoke those words – they were included in a typed letter she sent to my parents concerning my prolonged absence from school. Still, the indicting force of five syllables is as distinct in my ear as if she were looming over me.
I was 11 and, after coming down with a normal-seeming virus, I simply hadn’t got better. Instead, my system seemed to have become stuck, sunk into some grey, unchanging state. I had a headache, a sore throat and swollen lymph nodes, body pains both dull and sharp, fatigue and weakness, plus something I later learned went by the name of “postural orthostatic tachycardia syndrome”: a faintness and momentary blacking out upon sitting or standing up. When I list the symptoms in this way, as a collection of discrete and manageable items, it seems false. I wish things felt discrete and manageable. Instead, being ill felt – and still feels – more like a thick, obscuring cloud. When that cloud descends, my blood feels like old glue mixed with whatever you’d scrape off the bottom of a Swiffer. During bad episodes, I can’t quite locate my mind, or my personality. Reading is impossible. TV is abrasive. Breathing feels effortful, forming words is a strain.
For a shy and authority-fearing 11-year-old, none of this was easily communicated. The most legible symptom was the headache, so this was the diagnostic route pursued. Something called “benign intracranial hypertension” was inconclusively floated, then dropped. (Whatever was happening, I resisted the idea that the word “benign” applied.) Meanwhile, the implication of the deputy headmistress’s letter to my parents was clear: their daughter needed to stop this nonsense and get back to the pursuit of academic excellence.
Clearly, I’m casting the deputy headmistress as a Roald Dahl-ish villain, a Miss Trunchbull to the self-serving vision of myself as tiny Matilda. But she wasn’t wrong to refer to it as a mystery illness – a phrase she perhaps didn’t even mean unkindly. After all, the condition has remained something of a mystery, as chronic illnesses often do, even after diagnosis. I’ve gone half-mad wondering what’s within my control and what’s not, whether it’s delusional to believe I can get fully better, or defeatist to think I can’t.
I can’t say with certainty that any medical professional ever came out and uttered the phrase “it’s all in your head”. But for decades – first in the suburbs, then London proper, then New York where I moved in my mid-20s – doctor after doctor essentially told me there was nothing physically wrong with me. The sexism of western medicine, an institution that’s taken the male body as its test subject and often dismissed female patients, is now (finally) a recognised problem with its own name: “medical misogyny”. (The phrase was a finalist for the Macquarie Dictionary word of the year for 2025, though it was trounced in the end by “AI slop”.) But 10 – and certainly 20 – years ago, this prejudice was far less acknowledged. Like pretty much every other chronically ill woman, I’d groundhog through the same experience with silent despair.
The experience went like this: a doctor would glance at the blood test results in his or her (but usually his) hands and tell me I was fine. They’d tend to avoid my eyes as they said this. My test results were indeed fine, and so were my vitals, more or less (lowish blood pressure), but the situation clearly was not. One doctor told me to eat vegetables. When I managed to mumble that I did eat vegetables, this doctor slightly smirked as she said: “Yeah, but do you really?” Anger requires energy. It’s only now, recalling this scene, that I think I would have liked to break a chair. In the moment, I could barely speak. It’s a sorry truth that the sicker you are, the more you need to advocate for yourself and the less able you are to do so.
Now, I feel more inclined to give these doctors the benefit of the doubt. They were doing their best – and it’s possible the dismissiveness was something of a projection on my part. Still, a professional’s belief that the truth resided in the numbers on paper, not in the manifestly sick person before their eyes, seemed to me the same kind of literalism that causes people to drive their cars into bodies of water because the satnav told them to.
When I could struggle past self-pity (the ill person’s constant temptation) to arrive at an actual thought, it went something like: do these doctors think I’m acting? In which case, shouldn’t they urge me to set about becoming the next Meryl Streep, rather than wasting my talent in a GP’s office? Not being believed sometimes felt harder to bear than the illness itself. I needed a recognition of my reality – or, in medical terms, a confident and comprehensive diagnosis.
I was in my early 30s when my then partner, a skilful Googler, proposed that I had myalgic encephalomyelitis or ME, also known by the extremely vexing name of chronic fatigue syndrome. Vexing because it can make it sound like the problem is simply that you’re feeling a little meh. Which would describe most of the population, most of the time. People with ME/CFS also typically experience, beyond fatigue, a collection of other – shifting – symptoms. On my worst days I’ve felt in the grip of something almost demonic. Once, when I was listening to a guided meditation for pain relief, a professionally dulcet voice instructed me to locate a part of my body that wasn’t in pain. My attention found its way into my palms. Minutes later, a searing hot sensation came into both hands: it was as if I’d had the temerity to try to banish pain. Oh no you don’t, said the demon.
When my then partner suggested his layperson’s diagnosis, I didn’t immediately accept that I was entitled to such a stamp of legitimacy. My older brother Matthew had been diagnosed with the same condition aged 12, just a year before I too got sick. Was I just a little sister (I wondered belatedly) copying her big brother for attention? Here, the person having trouble recognising or believing in my condition was me. Maybe because the illness began when I was a child, I remained, in a sense, the kid deferring to adult judgment when it came to her own health – and these were adults suspicious of shirkers, loafers, fakers, hypochondriacs.
Eventually, I made an appointment with an ME/CFS specialist in New York City. The doctor was a bluff Englishman with a plummy accent and martial bearing, and strictly side-parted white hair. With something of the deputy headmistress’s general brusqueness and patrician confidence, the specialist professionally confirmed my boyfriend’s amateur diagnosis: yes, I had ME/CFS. I learned that the weird gluey sensation and temporary loss of vision I experienced when I stood up was not some negligible quirk, but an authenticating symptom caused by low blood pressure.
For 20 years, I’d exited doctors’ offices in desperation; for the first time I left in tears of relief. My intermittent condition was no longer a mystery illness but a diagnosable affliction – a complex neuroimmune disease with unknown causes, often triggered by infections. I felt I could now wield the diagnosis the same way an FBI agent might produce her badge. There’s still no standard treatment, but I knew at least that my illness had next to nothing to do with how many vegetables I did or did not eat. I wrote a long and earnest Facebook post, “coming out”, as it were, with ME/CFS, which I deleted not long after, embarrassed by its tone of self-importance and prideful victimhood.
In any case, the psychological balm of diagnosis probably helped my physical health more than the medication the specialist put me on, which didn’t do much to mitigate the spells of debilitation. These episodes continued to last between a couple of weeks and a few months, but after moving to Colorado in late 2018 I attributed a small but noticeable improvement to being newly in love. Which surely never hurts. The likelier source, though, of my more robust health was raised levels of vitamin D and serotonin: Boulder, Colorado, at 1,655 metres (5,430ft) above sea level, is famous for its sunshine and mountain trails.
When I’m well, which happily is most of the time, I regard past ME/CFS episodes with an almost neutral detachment – not out of Zen-like acceptance, but because I don’t quite believe in my illness. I suppose this is a similar psychological mechanism to that by which a postpartum person forgets the agony of childbirth. Why would you look back over your shoulder to contemplate the hell you’ve just escaped? When I’m back to being a vertical and functioning person in the world, I sometimes catch myself in a plainly contradictory thought: that didn’t really happen, and it never will ever again.
In late October 2023, it all happened again. It had never been so bad. Now, it was memory of good health that I couldn’t access. I could acknowledge, in a dull way, that I’d recently climbed massive Colorado mountains, but also, had I really? Getting out of bed to traverse the 10 feet or so to the bathroom seemed more daunting than scaling a 14,000ft peak.
I had no appetite, so my husband sought out mood-boosting treats in liquid form: fancy cold-pressed juices, exotic kombuchas and aspirationally flavoured sparkling waters – lychee, yuzu, calamansi. (It’s a golden age for few things in the US except bougie seltzer.) There was a surprisingly delicious green elixir called Goldthread plant-based tonic which I drank almost daily. A year or so later, while in good health, I made the mistake of cracking one open. It was Proust’s madeleine, but the death-metal-soundtracked, gothic-horror version: one sip hurtled me back to the darkness of late 2023. I’ll never drink that stuff again.
After eight weeks, I recovered, and once again assumed I’d never be so sick again. Then, in the spring of 2024, came another prolonged episode. Desperate, I decided to ask my body what it needed – a question perhaps born out of half a decade living in one of the most woo-woo college towns in the US. The reply – two words that popped into my mind from who knows where – was strangely clear and succinct: “Healing touch.” Healing touch it was, then. The search terms “energy healer boulder” returned 244,000 results. (Like I said, pretty woo-woo.)
I don’t remember much from my session with whichever practitioner it was whose name came up first – just two details. First, she told me I had a “leaky sacrum”, which is a phrase I probably would have found funny if I hadn’t felt like death. Apparently, a leaky sacrum had to do with over-helping others. (I didn’t attempt to understand this.) The second, more significant moment came when this same kind young woman glanced at my intake form, saw “ME/CFS” and said, “Oh, you need to try brain retraining.” There was a simple confidence in the way she said this, as though brain retraining – whatever that was – were the insulin to my diabetes, or inhaler to my asthma.
The confidence I heard in her voice clashed with my own scepticism. First, there was the name. I liked my brain best of all my organs; I didn’t think it needed retraining. I also felt a general resistance, calcified from thwarted hopes, to any new treatment. (I’ve tried IVs, acupuncture, adrenal support protocols, reiki, reflexology, homeopathy, traditional Chinese medicine and more supplements than I can count.) My biggest mental obstacle, though, was that “brain retraining” sounded like a version of “it’s all in your head”. For almost three decades now, I’d been insisting that the problem was the body – this undeniably physical suffering, these swollen golf balls of lymph nodes (feel them!), this unfakeable weakness (see it!) – not the mind. But this had been to make the mistake of assuming body and mind were discrete territories.
Nonetheless, remembering the energy healer’s assurance, I gave it a try. Once again, I was too sick and brain-fogged to do proper research – I simply contacted the first person Google threw my way. This was Jason McTiernan, a bright-eyed Irishman with spiky ginger hair and a full-wattage optimism whom, once I met him over Zoom, I judged to be about a decade younger than his actual 40. There on my laptop screen he rattled off a series of questions whose probing, psychological nature seemed at odds with his cheerful, checklisting manner: was I a perfectionist, would I say I was an overachiever, did I tend to over-extend myself in helping others? (Leaky sacrum! I thought.) I answered yes to all of the above. When Jason said, “Ironically, it’s never a lazy person that gets chronic fatigue,” it was another thing I wanted to stamp on a badge and brandish in the face of doubters. Even now, there’s part of me writing this piece as a kind of sicknote addressed to some sceptical superego – the great deputy headmistress in the sky – to excuse my lack of productivity.
The day after our inaugural Zoom, I transferred Jason a sum of money that made me wince. With that, he became my “wellness coach”. And so began the retraining of my brain. The power of the mind-body connection is the first of two principles on which brain retraining rests. It’s this mysterious feedback loop of the psychological and the somatic that explains the placebo effect. The second, more controversial notion is that conditions such as long Covid and ME/CFS are explained by the brain and autonomic nervous system erroneously perceiving threat, causing them to send signals to the body that it’s in danger. In this way, so the theory goes, the mind detains the body in an illness that has outlived its physical cause. Brain retraining seeks to “rewire” the mind’s neural pathways out of these loops. In other words, the very implication I’d railed against for decades was in some sense true: “psychosomatic” need no longer be a dirty word, but instead a term that goes some way to explaining the vexing nature of auto- and neuroimmune disorders. (Those sceptical of brain retraining point to research indicating the Epstein-Barr virus may be the original cause of lupus and ME/CFS; and even Jason acknowledged that the condition involves biology, not just neurology.)
I had homework. I was to log in to Jason’s website and watch messianically positive video testimonials, “recovery stories” in which men and women avowed the miraculous effects of brain retraining. There’s still scant empirical research, but I chose to put my faith in this body of anecdotal evidence. I was also to make an aspirational “vision board” depicting my dream life post-recovery. This offended my dignity, but I did it anyway. And I was to write down on a scrap of paper every tiny achievement of the day, fold it up, and deposit these little chits in a jar. (“Took a bath”, “made a smoothie” and other such feats.) Most important, though, were the brain retraining exercises themselves, repeated up to 20 times a day. The “deep relaxation technique” involved intoning “I choose to feel deeply and completely relaxed” before imagining a place associated with feelings of calm. (I not very imaginatively imagined a beach.) I was also to imagine enjoying light exercise without triggering the dreaded condition known to ME/CFS patients as PEM: post-exertional malaise. Finally, I was to thrust my arms out wide, tilt my chin high – a la Leonardo DiCaprio on the prow of the Titanic – as I emphatically said: “I am right on track to making a full and complete recovery!” Croaking out this statement in bed at a time when I could barely speak seemed both cruel and funny. Leo, as you remember, drowns.
The aim of all this was to revive the parasympathetic nervous system, known more colloquially as the body’s “rest and digest” mode – as opposed to the more famous, less salutary “fight or flight”. Apparently, I’d been stuck fighting and fleeing, even while ostensibly resting and digesting via meditation, deep breathing and unholy amounts of The Office. If I could believe myself well, I could trick my body into being well – not quite “fake it till you make it” but, as Jason put it, “embody it until you become it”.
As I immersed myself in the project, I guarded against too much hope by complaining to friends about the corniness of it all. But they were too concerned to join in. One said simply: “I don’t think it’s corny to get well.” She was right. The goal was lasting health – and dignified phraseology seemed a small sacrifice for such a prize. I went on beholding my vision board, filling my achievement jars, doing my goofy recitations. In short, I summoned faith, and hoped the ground for it would follow.
While I was sick, the thought of going running was about as tolerable as the idea of ordering pizza after Christmas dinner, but I kept effortfully willing the sensation of feet hitting the trail, heart pumping, generally feeling unstoppable – possibly while Sia’s classic 2016 empowerment anthem Unstoppable blasted through my headphones. In particular, I visualised reaching the trail’s highest point and turning to look back with satisfaction at how far I’d come. (Sometimes a person needs a crashingly obvious metaphor.)
On 13 May 2024, I laced up my trainers and the imagined became real: I sent Jason a grinning selfie from the top of the trail. He replied with several texts and a riot of joyful emojis. “Wahooo!!!! Well done Hermione!!!”; “Freedom increasing!! Wellness, peacefulness, energy!!” and so on.
Yeah! I thought. Or rather: Yeah!!!!!!! Maybe multiple exclamation points were underrated!!!!
There followed a period of quasi-religious mania. I was cured! (!!!) I began referring to my ME/CFS in the past tense and applying the principles of brain retraining to other areas of my life. Finding myself running further and faster, and writing with more ease, I felt superheroic. My husband, delighted to see me well, also became a little wary around me, as if I might take the mind-over-matter credo to the point of attempting to walk through walls.
Last October, I contacted Jason McTiernan for a second time, now as journalist rather than client. Some months earlier I’d been flattened by another episode. With it came a new desolation – the loss of faith. Only in this moment did it occur to me that I’d recovered from the previous episode in the usual amount of time. Like some disillusioned priest saying his Hail Marys anyway, I’d run through my brain retraining exercises, making entries in a notebook for all the rounds I was doing. I filled pages. Days passed. Nothing changed. After a couple of weeks I gave up. Why hadn’t it worked?
Jason is an engineer by training – a profession both alien and admirable to me – and I detected an engineer’s mindset in his methodology, not least when he described brain retraining as “giving your internal operating system a huge upgrade, programming in a better, more whole version of you”. Was it my deep aversion to the idea that a human being is a computer that got in my way? Was it my governing belief that language is not and cannot be code – and that this is precisely what makes it sacred – that prevented me from getting well? Was it, in short, my snobbery? “Language is very important,” Jason conceded. “It needs to feel congruent. If it doesn’t feel congruent, then it’s not going to work.”
I had another reservation that I didn’t admit to Jason: that the individualistic wellness discourse from which brain retraining emerges makes me politically uneasy. One foundational text for the wellness movement is Joe Dispenza’s bestselling You Are the Placebo, in which the author, a corporate consultant, claims to have recovered from a spine-shattering bike accident by visualisation alone – via daily painstaking imagining of each vertebra healing. Citing numerous case studies, Dispenza insists that we have the power to heal our bodies with our minds. This isn’t just a hard pill to swallow in a country where people perish because they can’t afford cancer treatment; it’s snake oil. Under the barbaric, for-profit system that Americans call “healthcare”, the implication that a person’s thoughts could be the only medicine they need is wildly irresponsible. Like other sufferers, I needed treatment, not vibes.
I’ve resisted writing about illness for 20 years. The uninvited, resented theme already took up so much mental space: I didn’t want to be struggling through brain fog to write about brain fog. I’d prefer to be thinking about things I actually love: books, art, politics. Or even just the joy of heated car seats, the frivolous pleasure of chic pyjamas. Anything, really, but ME/CFS. Covertly, I made a bargain with the demon: I’ll write about you if you leave. No deal. Writing this essay didn’t exorcise anything. In fact, other than six days on my feet in November, I lay in bed from late October until late January, spending my scant per diem of energy writing a few words here and there.
In other words, I haven’t produced the triumphant recovery narrative I’d intended, but nor is this some bitter exposé of the charlatanism of brain retraining. Brain retraining wasn’t miraculous, as I’d longed for it to be; and it also wasn’t the nonsense that in my grief and disappointment I’ve wanted to denounce it as being. There would have been a kind of comfort in either conclusion.
After a couple of very bad days last month, my husband and I talked about whether we needed to buy a Zimmer frame (a “walker” in more American English) so I could get from bed to bathroom without him hoisting me along like a wounded soldier. If I assented to having this fatally unsexy piece of geriatric furniture by my bedside, would I be summoning the kind of radical acceptance that would then, ultimately, bring about my recovery? Or, conversely, would a walking frame be the nail in the coffin that sealed my dreaded identity as “an invalid”, thereby dooming me to despair, self-pity and, in turn, worsening health?
The question became a mini-psychodrama, playing out between acceptance on the one hand and hope on the other. Once again, I was trying to do deals with the demon, and demons don’t do deals. I spent a couple of weeks performing a sloth-like relay from one piece of furniture to another to get from bed to bathroom. Then I walked slowly but unaided, one block up our street and back. The next day, I walked further. The idea of a walking frame suddenly seemed absurdly hypochondriac: what the hell had all that been about?!
I would have loved to emerge from this clutching some diamond of insight, but the only wisdom I have feels more like a modest lump of coal: illness is meaningless, random – it happens to all of us, to varying degrees, and it simply sucks. I was wrong to think that this chronic condition demanded meaning be wrested from it. What it asks for is so much more banal – just the ongoing work of management and mitigation. (Last week I saw a new specialist who recommended a roster of tests. She didn’t promise a cure, only more information.) I’m certain I’ll hike up mountains again – maybe even next month. I’m also sure that at some point, I’ll once again be in bed for weeks, watching the shadows on the walls. But there’s no demon. It’s just me and my still-mysterious illness.
