FOR THOSE WHO’VE BEEN TOLD: ‘IT’S ALL IN YOUR HEAD’

Carrie Cutforth
16 min readAug 23, 2022

A LOVE LETTER TO THE LONG-HAULERS, THE ME/CFS SUFFERERS & BEYOND

Grayscale illustration of a confused woman with a furrowed brow and with spikes of frost emanating from her forehead
Image by Midjourney

In the fall of 2016, two weeks after Trump was elected President, I got a bad flu. At the time I quaintly called it my ‘Trump flu’…only…

It never went away…(kinda like fascism; funny, that!).

You know, like on the third day of a really bad sick when your brain just fritzes out. Nothing makes sense, your concentration is shot, everything hurts, your feet are cold but you can’t even remember where you put your socks?

Yeah, that. Well, that became my life.

First for weeks.

Then for months.

Then for years.

I like to tell people now that: “Yeah, I got a post-viral infection before it was cool!”

I went from someone who had the work ethic of the Roman Empire, a CV that had grown 7 pages between 2011–2014 to someone barely subsisting. I went from swinging from the chandeliers to not being able to hold my head up at the dinner table. I went from someone with a voracious appetite for life, constantly hungry for new experiences, new ideas, new forms of storytelling to someone who’s world had grown very small: a terrain that mapped the six feet between my headboard and the foot of my bed.

The first few years were devastatingly hard. I mean yes, hard in that that was the most debilitating time period. But hard in that I had to grieve who I once was, the person I thought of myself to be (something I think all of you understand in a way you might not have before now, now that you are all collectively grieving your former selves in some way or another).

I am a writer (among several things). Being a wordsmith + imagination was my an important portion of my meagre bread and butter.

And suddenly I couldn’t remember words.

Like “purple.”

More infuriating than not remembering the word for purple, I have nine years of specialized art education. I knew every variance of purple from the Sennelier catalogue: ‘violet,’ ‘magenta,’ ‘lavender,’ ‘amethyst,’ ‘plum,’ ‘royal,’ ‘Prince.’

How do you write? How does a writer make a living; how do you ELUCIDATE when you can’t remember words? Basic fucking words like fucking ‘purple.’ I was in the midst of writing a novel when this hit me, for Christ’s sake.

This was before many people believed in things like Long COVID. You might have been one of those people: How does one get disabled from a flu? Pfft! Maybe what changed your mind was that you became a Long Hauler yourself, or know someone who has (I mean: it’s one in eight at this point).

But back then, it must have been ‘all in my head.’ Psychological. Not remembering words. From going to being the Energizer Bunny who could pound out an 80 hour work week like it was nothing to… nothing at all.

A photo of a giant inflatable parade balloon of the Energizer Bunny deflating on the street
Attribution: Sarah Lou

Funny that. It being ‘all in my head’.

Cause the secret to all this is…. drum roll, please!

I just also happen to be bipolar.

When I was 17, I read an article on Manic Depressive disorder and I knew it was me. It was like a tuning fork that resonated deeply. My parents tried to convince me otherwise: ‘it’s just a teenage phase.’ I knew it was not. (Also: see Boomers & Mental Illness Stigma: ‘my child CAN’T be broken!’)

And then, from the time I read that article, I spent the next almost decade chasing a diagnosis. The problem was: I was too ‘intelligent,’ too ‘self-aware’ to be bipolar, the docs insisted. ‘Crazy people don’t think they are crazy, or at least admit to it; ergo by admitting you are, you are not.’ Many in the medical profession actually believed this. I know, because that is what they would say to me to dismiss a diagnosis. To be fair it’s what a lot of people believed in the 80’s and 90’s all while happily ignoring the fact that too many Gen Xers knew of someone’s Boomer aunt or cousin who had been put away, forced to undergo electric shock therapy or even lobotomized for being different, eccentric, a loud woman, gay; only to return home: “an empty shellAnd they were never the same again.” We had been told these cautionary tales while still barely out of underoos! Why would any reasonable ‘insane’ person grow up to admit to having an ‘issue’ and risk facing the kinda horrors we had been cautioned against in childhood?

I was an outlier: someone looking for help for their mental illness when many were still terrified of what ‘help’ they might receive.

So for many years, docs would insist: “It was all in my head.”

“YEAH, LITERALLY,” I would complain, “IT’S IN MY FUCKING HEAD!”

A giphy of The Office character Kelly Erin Hannon, played by Ellie Kemper, holds her head in her hands, saying: “Ahh! My brain is ping-ponging around my head right now. It’s insane.”

I had already given up on getting diagnosed when I fell flat on my face into my Bipolar II diagnosis at the ripe old age of 34 almost by accident as if I had just tripped on the sidewalk (or as if the times in understanding mental illnesses had finally caught up).

I bring up my backstory to point out: this wasn’t my first merry-go-round of knowing something was deeply wrong with me and being told ‘it’s all in my head.’ But this time, with the chronic fatigue or post-viral syndrome or whatever it was I was plagued with, I didn’t have the stamina of my 17 to 27-year-old-self to try to chase a diagnosis. Not that I didn’t try. But it is deeply unfair to be tasked to repeatedly go after doctors for tests or referrals, knowing what each visit is going to cost you in spoons. A fifteen minute visit to the doctors would mean three days in bed for me. And each time just to get a shrug that suggested ‘I dunno. Maybe it’s all in your head?’ And then they’d cast a glance down at my bipolar diagnosis as almost confirmation.

So I gave up chasing a diagnosis that I had no energy in pursuing and no faith that I would get help in a timely matter, preferring again to wait for the times in which the understanding of invisible chronic illnesses had finally caught up.

The deep prejudice some doctors have with CFS or ME (Myalgic encephalomyelitis) is not unknown. And now Long Haulers of Covid are experiencing it too all the while mainstream culture easily discards and forgets the history of Encephalitis Lethargica, an epidemic that ran parallel to the Spanish Flu. Culturally, a lot of us prefer to think of pandemics and epidemics in binary terms: alive or dead. Survivors versus death-count rates. In terms of being a mass disabling event, memory is short, history unheeded.

A banner from the film Awakenings in which a fictional doctor, Dr. Malcolm Sayer (played by Robin Williams) steadies and supports patient Leonard Lowe (played by Robert De Niro), a survivor of the Encephalitis lethargica epidemic.
This film is only 32 years old.

But I have a proposition as someone who is certifiable, as someone with a disorder that is VERY MUCH in my head: allow me to VOLUNTEER MY SERVICES and delineate the difference between being mentally ill and experiencing the brain fog that comes from a post-viral syndrome.

BRAIN FOG

It feels almost like a betrayal: to talk about non-articulation, aphasia, when you are feeling clear and coherent. A fucking cheat.

A mid-century modern tv playing static on the screen.

I used to think of my brain fog like static on a TV but that is not quite true. Static on TV is something even though it is presented as a non-thing. Static has presence, a hint of the sublime. It has, at least, an OMMMM to it.

On the left, a giphy of scrambled 90’s cable porn. On the right, a meme of a screencap of same distortion with the caption: “Dude I see a nipple” (sic).

My brain fog was closer to scrambled 90’s cable porn where you are straining to find meaning, to find sense, to find a ‘fucking nipple’ but it is all elusive, distorted. But there is that constant straining, the attempt to find cohesion, narrative, anything, Prince.

You feel yourself fade away. Opportunities, relationships, connections, once glowing embers, now all cooling because it all takes more energy and clarity to stoke those fires than you have. At first I would try to keep up with social media, but it would take me two hours to try to compose a single tweet all the while knowing the words were wrong somehow and meaning was off-kilter. And then when people would be confused or complain, I no longer even had the energy to respond. What was the point of attempting to clarify, when my brain was just murk?

A giphy graphic illustration of fictional character Marty Mcfly watching his hand fade away, taken from a scene from the film Back to the Future.
Illustration Credit: iBtrave

The conversations I had with myself IN MY HEAD during brain fog would often go like this:

“I need to reply to… what’s their name… Who am I talking about… what am I talking about? There was a thing I gotta do. Reply to someone… who. Oh yeah… (*stares at message for a long while). I don’t know what any of this means… I’ll try to reply… later. No, send a thingy… a thumb in the air thing, and just get it over with or you’ll forget. Wait, what do you call that thingy again…an emot? No, that’s not right… Never mind, you’ll never remember the right word for it now. *Hits send on ‘thumby emot.’

It was like being forced to play the most infuriating game of mad libs at all times but with my very own mind. If I had to write the previous sentence back in the spring of 2017 it would look like this:

A graphic of a mad lib of the previous sentence in which the words “forced,” “play,” “infuriating,” and “mind” are blanked out with various words written in blue pen for each blank and struck out multiple times in red pen.

It was very fucking lonely. Like being stuck alone in your home for two years during a pandemic. You seem depressed? Well, I’m depressed NOW ‘cause this shit is depressing!

It was also very fucking boring. A few acquaintances would tell me things like: “BE WHERE YOU ARE!” Yeah, I’m in bed, doing almost nothing, for days on end, not even being able to follow the plot of the burning log channel.

A giphy of fictional character, the Log Lady, from David Lynch’s Twin Peaks, looks around, confused.

It wasn’t always like this, this bad, this stuck, but when it was like this: it felt like it had always been like this and would always be like this, living in that liminal state. Akin to being stuck in your apartment for the fifth or sixth lock time: time stops having meaning.

I did improve albeit slowly. Each passing year was a slow lift of one of seven veils. I learned to jealously guard my spoons, covet what little energy I had, order groceries delivered rather than risk the days in bed a trip to the nearby grocer would cost. I learned to work around the work that was needed to get done, and work around words that I couldn’t remember off the top of my… the top of my… the top of my ‘what?’

“LINE!”

A giphy of actor Tom Holland asking someone off screen, “What’s my line again,” before turning towards the camera, “That’s right, I’m Spider-man!”

Oh, right: ‘my head.’

I began to remember words like purple, even magenta on a good day. And I began to write again.

Slowly.

One word at a time.

With a thesaurus always a touch away.

However I never did manage to learn how to spell ‘Myalgic encephalomyelitis’ let alone pronounce it. Couldn’t we come up with a more easy to remember syndrome for those of us struggling with communication impairments? Jesus!

NOW FOR THE FUN STUFF: (Trigger warning: suicidal ideation, bipolar depression, mixed-state, child abuse)

BIPOLAR DEPRESSION

Bipolar depression is Shelley Winters with her throat slit at the bottom of the lake, only the gears of the jalopy keep grinding, and grinding, and grinding and grinding in the mud.

A film still of murder victim Willa Harper’s body, played by Shelley Winters, at the bottom of the lake strapped to a jalopy in the iconic scene from Charles Laughton’s classic film: The Night of The Hunter.
Film still from the classic 1955 film The Night of The Hunter directed by Charles Laughton.

That is your brain.

Words were never lost during ‘crazy’; it is the opposite — too many words, all at once, dominoes going in all directions reminding you why you are unworthy, all the reasons why you are a loser, all the reasons you should just kill yourself to save everyone the trouble. So many words, words in all directions, words like a hammer, words wielded like the sword of Michael the archangel of God seeking retribution.

But at least it’s not like mania, where trying to catch a whirling thought is like trying to catch a bullet in your hand. No, bipolar depression is your mind locked away in its own dank prison: a labyrinth of long hallways of past broken relationships, walled-up opportunities, and dead ends littered with projector screenings replaying, on repeat, the memory of your father calmly closing all the windows before chasing you around the living room; his thick black belt licking at your heels as you scamper away screaming.

Not like chronic fatigue, which is not remembering the word ‘purple’ and grieving the person you once were: the person who used to be able to write purple prose like: “She stood, askance, illuminated by the electric sky of dancing heliotrope clouds behind her…”

Hey, I never said I had been a good writer.

From the outside casual observance, brain fog can indeed look like depression or in the least a lack of executive functioning. Particularly when you’ve had it long enough that it becomes depressing. However, with my worst bipolar depression, I likewise couldn’t get out of bed because I WAS IN THE FETAL POSITION in extreme psychic pain, sobbing uncontrollably for days.

It. Is. Not. The. Same.

Now I know what some of you are thinking: “Carrie, you can’t just go around cherry picking very specific mental illnesses to compare with chronic fatigue brain fog! It’s like comparing apples to plums!”

As opposed to what? The cherry picking by too many in the medical establishment and regular joes alike in asserting a non-specific, unquantifiable, unstudied, fuzzy, and vague ‘psychological disorder’ in which the sole criteria of diagnosis is: seeking professional help for a debilitating chronic illness that we don’t presently have cut-and-dry answers for?

Wasn’t that the same criteria that was used for asserting: fibromyalgia was psychological, Epilepsy was psychological, or even my very own very real struggle with bipolar disorder being posited as psychosomatic throughout the late 80’s and 90’s? Oh, the irony.

Also, why stop at my very specific mental illness? Let’s line them ALL up, every specific mental illness and non-specific clusters from the DSM-5 and beyond and compare all of them, one by one, to the spectrum disorder of ‘It’s-All-In-Your-Head-itis.’

Can you all at least admit it’s a pretty fucking useless diagnosis being told ‘it’s all in your head’ or at least it’s as useful as being diagnosed as phlegmatic In The Year of Our Lord 2022. So what if it is ‘in our heads?’ If it is, besides Cognitive Behavioural Therapy (c̶r̶o̶s̶s̶i̶n̶g̶ ̶c̶b̶t̶ ̶o̶f̶f̶ o̶u̶r̶ ̶d̶i̶s̶c̶o̶u̶r̶s̶e̶ ̶t̶a̶b̶l̶e̶ ̶f̶o̶r̶ r̶e̶a̶s̶o̶n̶s̶), what precisely is the treatment plan? Graduated Exercise Therapy (GET)? Putting the controversies on that topic aside, how very… Victorian of you? I swear one too many of you grew up reading The Secret Garden uncritically.

A giphy of fictional character Colin Craven (played by Edan Hayhurst), shaking his head forlornly from the confines of his bed in the 2020 film adaptation of The Secret Garden.
Giphy from the 2020 film adaption of The Secret Garden.

I digress. The point of this is to catch you all up to speed of what I’ve been up to! Wheeeeeee! The WEIRRRRRRRRRDEST THING happened to me:

Two weeks after my second Moderna shot, the chronic fatigue lifted. Faded away. Gone.

Like it had never been.

I found an article that showed a preliminary study on Long Haulers (which including some ME/CFS sufferers) reactions to the vaccine: “56.7% of respondents experienced an overall improvement in symptoms… and 18.7% reporting a deterioration in their symptoms,” with mRNA vaccines showing the greatest improvements.

Jesus, over 18% got worse. I guess I was one of the lucky ones. Or perhaps it wasn’t the Moderna shot, but that I had finally recovered after five years.

Regardless, the day I had dreamed of for years had come. I was better! I could think and see in high definition again! Glory be, I was myself again! FINALLY!

A giphy of fictional character Jake (played by John Belushi) bathed in ‘Holy Light’ screaming ecstatically “I have seen the light!” while his brother Elwood (played by Dan Ackroyd) looks on in confusion in ‘The Gospel Scene’ from the 1980 film The Blues Brothers.

ONLY!!! (I had forgotten this part:)

I’m fucking bipolar.

Ha, that bitch!

The ONE thing I took for granted while suffering as a shade of my former self was: IT IS REALLY HARD to get manic when you can’t get out of bed, which means it’s really hard to get into that fetal position that comes with bipolar depression after the crash of mania or a mixed state (the latter being episodes of which I was more likely to suffer from).

It’s almost like the years between fall 2016 and the late summer of 2021 was a reprieve from my ACTUAL mental illness (with the added bonus of serving as an intensive boot-camp for the upcoming social isolation we’d all endure during the pandemic). This is not to minimize my or any one else’s experience with the excruciating and horrific experience of living with a post-viral syndrome but to reiterate that it is very much cannot be simply dismissed as a unspecified mental illness or merely depression.

A giphy of The Good Place’s fictional character Tahani Al-Jamil (played by Jameela Alia Jamil) saying: “I have been training for this day my entire life.”

As strange as it was being chronically ill at the outset of a pandemic, it was stranger still getting ‘better’ because of it. The thing I longed for, desperately desired: to finally be me again, not some shade of myself, not someone with M.E., was about to become my worst fucking nightmare.

I would not say that during my five year bout with bad brain fog that I had been emotionless — I still very much had the capacity to feel things, and did, even deeply at times. But I did not have to contend with the runaway train of ALL THE FEELS ALL THE FUCKING TIME that is your brain on bipolar. And the worst time for this particular lightning to strike is — not just a global pandemic — but in the midst of the whole world taking their hands off the wheel during one at the risk of endangering so many people’s lives and health.

Witnessing the world not just being on fire but the public leaping into the flames of risk for Long COVID or death because they were ‘so over it,’ was devastating and catastrophic in terms of mental health. I completely shut down. Could not get out of bed. Could not rise to the occasion as someone is want to do with bipolar depression during ‘precedented’ times, let alone ‘unprecedented’ ones.

But what I did not have during this time since my chronic fatigue has lifted just over a year ago and my bipolar has been back in full force was fucking brain fog. Because NOW I have words. A WHOLE FUCKTON of them. Words that I have to strap myself down from spewing in a wide vomit of rage.

The universe doesn’t cut any of us a break just because of WORLD CONDITIONS being what they are. There has been no pause button to hit while we’ve all been suffering from our collective traumas that are specific to the pandemic, specific to the rise of fascism, to global warming, to racism, the looming spectres of genocidal colonization, to war. Our daily lives are also stuffed with just ‘the shit’: petty grievances, dramas, painful falling-outs, funerals held over zoom. And it can feel, unseemly, to find these daily challenges, which we would see ‘in normal’ times as the challenges they are, hard to cope with. So we shut up, close off, numb out, not wanting to burden others or end up overwhelming them with our overwhelm during these overwhelming times. We are being collectively trained to ‘move on with moving on,’ and ‘get going with getting on,’ in order to keep moving ‘onwards and upwards’ with no space to allow ourselves to feel things deeply. Each thing. Every little one. Every little straw, every little indignity, with its own weight bearing down on our backs while we are allowed only one recourse left: to heave a collective shrug, an empty gesture that offers neither a diagnosis or a cure for what ails us. Maybe the last several years have been all in our heads. It would be nicer if that were true.

ETA:

I am revisiting this article in Oct 29, 2023 as I plan to send it to a friend who now suffers from Long Covid, and realize I should add an update from where this article left off. While its true after my second moderna shot, the chronic fatigue brain fog lifted significantly, recovery is never a straight line, particularly when you are dealing with multiple chronic illnesses in tandem. In some ways, I’ve improved even more since this article was written, as going over it now, I can see where I was still struggling with ‘the right words’ and phrases (which I’ve lightly edited now). But during other times, since writing this article, I still struggle with bouts of fatigue, brain fog, and executive function, however; it has become much more manageable and my life is no longer as confined between the headboard and the foot of my bed as it was in the first year of getting chronic fatigue, and the spells I do get have been shorter, less frequent, less intense over time (but I’m also better now at guarding my spoons).

I also acknowledge that our understanding of Long Covid and post viral fatigue has grown in leaps and bounds, as well as the culture surrounding how we talk about it, and each new week seems to present more damming evidence of just how dangerous Long Covid is. The links to articles herein remain as they were the time that this was originally written so a caveat to keep in mind that they might not reflect our current understanding: both scientifically and culturally.

Further, I have now copy-edited the introduction to this article for length and also because I didn’t like it so much. Cheers.

If you liked this content, please consider tipping. The last eight months have been brutal and I have a mountain of BILLS TO PAY!! Thank you ever so much!

Image of Carrie Cutforth in an alleyway

ABOUT CARRIE CUTFORTH

A Toronto-based alchemist who creates art and words from the crushed horns of rainbow unicorns and the stolen tears of lost Yetis, Carrie Cutforth is a foul-mouthed saucy minx, a salty dog, and a word farmer. Her kids call her ‘Mumsy’.

Check out her linktree here.

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