\n<\/p>\n
A<\/span>t 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 \u2013 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 \u201cmystery illness\u201d. In truth, the deputy headmistress never actually spoke those words \u2013 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.<\/p>\n I was 11 and, after coming down with a normal-seeming virus, I simply hadn\u2019t 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 \u201cpostural orthostatic tachycardia syndrome\u201d: 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 \u2013 and still feels \u2013 more like a thick, obscuring cloud. When that cloud descends, my blood feels like old glue mixed with whatever you\u2019d scrape off the bottom of a Swiffer. During bad episodes, I can\u2019t quite locate my mind, or my personality. Reading is impossible. TV is abrasive. Breathing feels effortful, forming words is a strain.<\/p>\n 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 \u201cbenign intracranial hypertension\u201d was inconclusively floated, then dropped. (Whatever was happening, I resisted the idea that the word \u201cbenign\u201d applied.) Meanwhile, the implication of the deputy headmistress\u2019s letter to my parents was clear: their daughter needed to stop this nonsense and get back to the pursuit of academic excellence.<\/p>\n Clearly, I\u2019m 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\u2019t wrong to refer to it as a mystery illness \u2013 a phrase she perhaps didn\u2019t even mean unkindly. After all, the condition has remained something of a mystery, as chronic illnesses often do, even after diagnosis. I\u2019ve gone half-mad wondering what\u2019s within my control and what\u2019s not, whether it\u2019s delusional to believe I can get fully better, or defeatist to think I can\u2019t.<\/p>\n I<\/span> can\u2019t say with certainty that any medical professional ever came out and uttered the phrase \u201cit\u2019s all in your head\u201d. But for decades \u2013 first in the suburbs, then London proper, then New York where I moved in my mid-20s \u2013 doctor after doctor essentially told me there was nothing physically wrong with me. The sexism of western medicine, an institution that\u2019s taken the male body as its test subject and often dismissed female patients, is now (finally) a recognised problem with its own name: \u201cmedical misogyny\u201d. (The phrase was a finalist for the Macquarie Dictionary word of the year for 2025, though it was trounced in the end by \u201cAI slop\u201d.) But 10 \u2013 and certainly 20 \u2013 years ago, this prejudice was far less acknowledged. Like pretty much every other chronically ill woman, I\u2019d groundhog through the same experience with silent despair.<\/p>\n 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\u2019d 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 <\/em>eat vegetables, this doctor slightly smirked as she said: \u201cYeah, but do you really?\u201d Anger requires energy. It\u2019s only now, recalling this scene, that I think I would have liked to break a chair. In the moment, I could barely speak. It\u2019s 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.<\/p>\n <\/span>The mountains on the outskirts of Boulder, Colorado.<\/span> Photograph: Benjamin Rasmussen\/The Guardian<\/p>\n Now, I feel more inclined to give these doctors the benefit of the doubt. They were doing their best \u2013 and it\u2019s possible the dismissiveness was something of a projection on my part. Still, a professional\u2019s 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.<\/p>\n When I could struggle past self-pity (the ill person\u2019s constant temptation) to arrive at an actual thought, it went something like: do these doctors think I\u2019m acting<\/em>? In which case, shouldn\u2019t they urge me to set about becoming the next Meryl Streep, rather than wasting my talent in a GP\u2019s office? Not being believed sometimes felt harder to bear than the illness itself. I needed a recognition of my reality \u2013 or, in medical terms, a confident and comprehensive diagnosis.<\/p>\n I<\/span> 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\u2019re 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 \u2013 shifting \u2013 symptoms. On my worst days I\u2019ve 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\u2019t 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\u2019d had the temerity to try to banish pain. Oh no you don\u2019t, said the demon.<\/p>\n When my then partner suggested his layperson\u2019s diagnosis, I didn\u2019t 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 \u2013 and these were adults suspicious of shirkers, loafers, fakers, hypochondriacs.<\/p>\n 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\u2019s general brusqueness and patrician confidence, the specialist professionally confirmed my boyfriend\u2019s 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.<\/p>\n For 20 years, I\u2019d exited doctors\u2019 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 \u2013 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\u2019s 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, \u201ccoming out\u201d, as it were, with ME\/CFS, which I deleted not long after, embarrassed by its tone of self-importance and prideful victimhood.<\/p>\n In any case, the psychological balm of diagnosis probably helped my physical health more than the medication the specialist put me on, which didn\u2019t 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.<\/p>\n When I\u2019m well, which happily is most of the time, I regard past ME\/CFS episodes with an almost neutral detachment \u2013 not out of Zen-like acceptance, but because I don\u2019t 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\u2019ve just escaped? When I\u2019m back to being a vertical and functioning person in the world, I sometimes catch myself in a plainly contradictory thought: that didn\u2019t really happen, and it never will ever again.<\/p>\n I<\/span>n late October 2023, it all happened again. It had never been so bad. Now, it was memory of good health that I couldn\u2019t access. I could acknowledge, in a dull way, that I\u2019d 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.<\/p>\n 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 \u2013 lychee, yuzu, calamansi. (It\u2019s 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\u2019s madeleine, but the death-metal-soundtracked, gothic-horror version: one sip hurtled me back to the darkness of late 2023. I\u2019ll never drink that stuff again.<\/p>\n After eight weeks, I recovered, and once again assumed I\u2019d 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 \u2013 a question perhaps born out of half a decade living in one of the most woo-woo college towns in the US. The reply \u2013 two words that popped into my mind from who knows where \u2013 was strangely clear and succinct: \u201cHealing touch.\u201d Healing touch it was, then. The search terms \u201cenergy healer boulder\u201d returned 244,000 results. (Like I said, pretty woo-woo.)<\/p>\n I don\u2019t remember much from my session with whichever practitioner it was whose name came up first \u2013 just two details. First, she told me I had a \u201cleaky sacrum\u201d, which is a phrase I probably would have found funny if I hadn\u2019t felt like death. Apparently, a leaky sacrum had to do with over-helping others. (I didn\u2019t attempt to understand this.) The second, more significant moment came when this same kind young woman glanced at my intake form, saw \u201cME\/CFS\u201d and said, \u201cOh, you need to try brain retraining.\u201d There was a simple confidence in the way she said this, as though brain retraining \u2013 whatever that was \u2013 were the insulin to my diabetes, or inhaler to my asthma.<\/p>\n 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\u2019t think it needed retraining. I also felt a general resistance, calcified from thwarted hopes, to any new treatment. (I\u2019ve 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 \u201cbrain retraining\u201d sounded like a version of \u201cit\u2019s all in your head\u201d. For almost three decades now, I\u2019d been insisting that the problem was the body \u2013 this undeniably physical<\/em> suffering, these swollen golf balls of lymph nodes (feel them!), this unfakeable weakness (see it!) \u2013 not the mind. But this had been to make the mistake of assuming body and mind were discrete territories.<\/p>\n Nonetheless, remembering the energy healer\u2019s assurance, I gave it a try. Once again, I was too sick and brain-fogged to do proper research \u2013 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, \u201cIronically, it\u2019s never a lazy person that gets chronic fatigue,\u201d it was another thing I wanted to stamp on a badge and brandish in the face of doubters. Even now, there\u2019s part of me writing this piece as a kind of sicknote addressed to some sceptical superego \u2013 the great deputy headmistress in the sky \u2013 to excuse my lack of productivity.<\/p>\n The day after our inaugural Zoom, I transferred Jason a sum of money that made me wince. With that, he became my \u201cwellness coach\u201d. 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\u2019s 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\u2019s 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 \u201crewire\u201d the mind\u2019s neural pathways out of these loops. In other words, the very implication I\u2019d railed against for decades was in some sense true: \u201cpsychosomatic\u201d 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.)<\/p>\n <\/span>Hermione Hoby at home.<\/span> Photograph: Benjamin Rasmussen\/The Guardian<\/p>\n I had homework. I was to log in to Jason\u2019s website and watch messianically positive video testimonials, \u201crecovery stories\u201d in which men and women avowed the miraculous effects of brain retraining. There\u2019s still scant empirical research, but I chose to put my faith in this body of anecdotal evidence. I was also to make an aspirational \u201cvision board\u201d 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. (\u201cTook a bath\u201d, \u201cmade a smoothie\u201d and other such feats.) Most important, though, were the brain retraining exercises themselves, repeated up to 20 times a day. The \u201cdeep relaxation technique\u201d involved intoning \u201cI choose to feel deeply and completely relaxed\u201d 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 \u2013 a la Leonardo DiCaprio on the prow of the Titanic \u2013 as I emphatically said: \u201cI am right on track to making a full and complete recovery!\u201d Croaking out this statement in bed at a time when I could barely speak seemed both cruel and funny. Leo, as you remember, drowns.<\/p>\n The aim of all this was to revive the parasympathetic nervous system, known more colloquially as the body\u2019s \u201crest and digest\u201d mode \u2013 as opposed to the more famous, less salutary \u201cfight or flight\u201d. Apparently, I\u2019d been stuck fighting and fleeing, even while ostensibly resting and digesting via meditation, deep breathing and unholy amounts of The Office. <\/em>If I could believe myself well, I could trick my body into being<\/em> well \u2013 not quite \u201cfake it till you make it\u201d but, as Jason put it, \u201cembody it until you become it\u201d.<\/p>\n 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: \u201cI don\u2019t think it\u2019s corny to get well.\u201d She was right. The goal was lasting health \u2013 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.<\/p>\n 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 \u2013 possibly while Sia\u2019s classic 2016 empowerment anthem Unstoppable blasted through my headphones. In particular, I visualised reaching the trail\u2019s highest point and turning to look back with satisfaction at how far I\u2019d come. (Sometimes a person needs a crashingly obvious metaphor.)<\/p>\n 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. \u201cWahooo!!!! Well done Hermione!!!\u201d; \u201cFreedom increasing!! Wellness, peacefulness, energy!!\u201d and so on.<\/p>\n Yeah! I thought. Or rather: Yeah!!!!!!! Maybe multiple exclamation points were underrated!!!!<\/p>\n 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.<\/p>\n L<\/span>ast October, I contacted Jason McTiernan for a second time, now as journalist rather than client. Some months earlier I\u2019d been flattened by another episode. With it came a new desolation \u2013 the loss of faith. Only in this moment did it occur to me that I\u2019d recovered from the previous episode in the usual amount of time. Like some disillusioned priest saying his Hail Marys anyway, I\u2019d 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\u2019t it worked?<\/p>\n Jason is an engineer by training \u2013 a profession both alien and admirable to me \u2013 and I detected an engineer\u2019s mindset in his methodology, not least when he described brain retraining as \u201cgiving your internal operating system a huge upgrade, programming in a better, more whole version of you\u201d. 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 \u2013 and that this is precisely what makes it sacred \u2013 that prevented me from getting well? Was it, in short, my snobbery? \u201cLanguage is very important,\u201d Jason conceded. \u201cIt needs to feel congruent. If it doesn\u2019t feel congruent, then it\u2019s not going to work.\u201d<\/p>\n I had another reservation that I didn\u2019t 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\u2019s bestselling You Are the Placebo, <\/em>in which the author, a corporate consultant, claims to have recovered from a spine-shattering bike accident by visualisation alone \u2013 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\u2019t just a hard pill to swallow in a country where people perish because they can\u2019t afford cancer treatment; it\u2019s snake oil. Under the barbaric, for-profit system that Americans call \u201chealthcare\u201d, the implication that a person\u2019s thoughts could be the only medicine they need is wildly irresponsible. Like other sufferers, I needed treatment, not vibes.<\/p>\n I<\/span>\u2019ve resisted writing about illness for 20 years. The uninvited, resented theme already took up so much mental space: I didn\u2019t want to be struggling through brain fog to write about brain fog. I\u2019d 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\u2019ll write about you if you leave. <\/em>No deal. Writing this essay didn\u2019t 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 <\/em>of energy writing a few words here and there.<\/p>\n In other words, I haven\u2019t produced the triumphant recovery narrative I\u2019d intended, but nor is this some bitter expos\u00e9 of the charlatanism of brain retraining. Brain retraining wasn\u2019t miraculous, as I\u2019d longed for it to be; and it also wasn\u2019t the nonsense that in my grief and disappointment I\u2019ve wanted to denounce it as being. There would have been a kind of comfort in either conclusion.<\/p>\n After a couple of very bad days last month, my husband and I talked about whether we needed to buy a Zimmer frame (a \u201cwalker\u201d 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 \u201can invalid\u201d, thereby dooming me to despair, self-pity and, in turn, worsening health?<\/p>\n 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\u2019t 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?!<\/p>\n 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 \u2013 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 \u2013 just the ongoing work of management and mitigation. (Last week I saw a new specialist who recommended a roster of tests. She didn\u2019t promise a cure, only more information.) I\u2019m certain I\u2019ll hike up mountains again \u2013 maybe even next month. I\u2019m also sure that at some point, I\u2019ll once again be in bed for weeks, watching the shadows on the walls. But there\u2019s no demon. It\u2019s just me and my still-mysterious illness.<\/p>\n Listen to our podcasts here and sign up to the long read weekly email here.<\/p>\n","protected":false},"excerpt":{"rendered":" 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 \u2013 as was her voice, which made<\/p>\n","protected":false},"author":1,"featured_media":45150,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[51],"tags":[820,4548,546,23308,8026,3919,7675,8027,9662],"class_list":{"0":"post-45149","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-health","8":"tag-battle","9":"tag-chronic","10":"tag-days","11":"tag-demonic","12":"tag-fatigue","13":"tag-feels","14":"tag-maddening","15":"tag-syndrome","16":"tag-worst"},"_links":{"self":[{"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/posts\/45149","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=45149"}],"version-history":[{"count":0,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/posts\/45149\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/media\/45150"}],"wp:attachment":[{"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=45149"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=45149"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=45149"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}