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Gabrielle de la Puente

I’m dragging my feet writing this piece, the same way my sick body lags on days when I — whatever. I haven’t written about Long Covid for a while. After hitting the three year mark, I am too bored by the state of my body to impose it on anyone else. Bored of waking up thinking, oh no, I forgot to put myself on charge again. Bored of having to look after myself. I want variety in my day and in the air I breathe but I am bored of cajoling myself to reach new environments only to feel my body run out of battery right there in public. Bored of comparing myself to electrical devices. Bored of having to suddenly leave cafés without saying goodbye to the person behind the till, who is tired in other ways, because there are no words in my brain to leave her with that might soften another French exit.

Bored of well-meaning people asking how I’m doing and retelling the very practised story about how I used to do Kung Fu and go on holiday alone and one day I ran 5K around the park but when I woke up the following morning I had Covid and it was bad but not hospital-bad, but then I didn’t get better, and whenever I exerted energy I was punished for it, even though exerting energy is all I ever wanted to do, and a month in I was hospital-bad, and five months in I became housebound because by that point I had been hollowed out, and when I did make it to doctor’s appointments nobody knew what to do with me and different nurses on separate visits just said my heart rate was rocketing because I had white coat syndrome, haha, insinuating I was scared of doctors and that the whole thing was in my head, even though I wasn’t scared of anything except the new way I felt, and that was until a doctor at the Long Covid Clinic told me it wasn’t in my head, it was actually in my blood, because he figured out that Covid had wrecked my blood vessels and given me Postural Orthostatic Tachycardia Syndrome which meant that my nervous system was fucked, and so this man put me on beta blockers and the world got a little bigger because I could go outside again, and I did, I went to London twice, and I was slow moving through Chinatown but I didn’t care that I was slow because I wasn’t home, and things were feeling more possible and I was remembering what weather felt like on bare skin, eating fresh char sui buns, and looking my friends in the eyes, until I got Covid a second time and tried my best not to think about death but the way it hurt felt different, so I went back to the Long Covid Clinic except it turned out that one good doctor had dropped dead at work from a brain haemorrhage and it was his grieving colleague that saw to me, and when she tested my body against the results he’d gotten a year ago, she discovered that the second Covid infection had made my blood vessels twice as bad, viral multiplier, big nerf, bad character, and I was going to have to double my beta blocker dose and the cardiologist would have to see me because, and I quote, they should not be seeing these numbers in a 29 year old, and I agreed, and I said, fine, okay, fine, thinking my baseline was going to rise again, even slightly, because that would have made for a good story, and saved me like it did the first time, and I suppose things improved a little, but not fairly, because whilst I walked more in January 2024 than I have done in the three years prior, I have never been in so much pain, experiencing more orthostatic headaches in the past month than the entire timespan of my illness maybe because I walked more in January 2024 than I did in the three years prior, and I’m bored of the punishments, and the boom and bust that leaves me flat in bed, and the same cycle of grief, and of never knowing when the pain will floor me or how long I’ve got in public or how far I will make it into recording one of these texts before the body admits itself and you can hear me lose my breath in this private space between us.

That’s how I’m doing. Overly conscious of how boring it is to repeat the same thing, and feeling the need to be tactical in the ways that I discuss my chronic state, stringing the story together with commas-only this time around because I think it will better convey the feeling that there is no end in sight.

For a while now, people have recommended I watch the 2017 documentary Unrest, a film by Jennifer Brea about her grapple with chronic fatigue syndrome, or myalgic encephalomyelitis. Shortlisted for an Oscar, it begins with home videos from before Jennifer became ill. Childhood, holidays, weddings. But then there are hospital visits, medication investigations, interviews with scientists, and a note is made about the lack of funding put towards researching a disease that disables millions. The documentary visits other families facing the same challenges or who faced the same challenge but lost their person to suicide. We see how isolating chronic fatigue is, how much of a strain it places on relationships, and we are also shown how many people rely on the internet in order to keep a sense of community. The documentary ends with a protest called Millions Missing, in which empty shoes are displayed in public to represent all the people we don’t see because they are bed-bound or housebound due to the shackles of ME.

I watched the documentary and at one point there were tears in my eyes, these static little things that decided they weren’t going anywhere after all. By the time I was done watching this very professional documentary that had done all its due diligence, gone through the motions, hitting all the notes I would expect an Oscar-shortlisted documentary about disability to hit, I realised I had found the whole thing boring and I sat there half-guilty, but not really, wondering why.

The obvious answer is that I am so saturated by the same conversations that I could have directed the film myself. The conversations are not boring to me because they are unimportant, I am just numb to them, and I have to be in order to not go insane. There were moments when I glazed over because I was watching the story of a middle class person who could afford to make investigating their illness a full-time endeavour, and the slick cinematography matched something in that middle class, relative ease. I don’t get to do that. Not many of us do. But the less obvious reason as to why I found it boring is this: Unrest delivers an honest account of chronic fatigue syndrome, and it’s an honesty without art or artifice. That is boring to me because, based on my experience of communicating this illness to people outside of my body, I don’t believe the plain scientific truth is even enough.

The Unrest documentary was made in 2017 and we have all experienced a world with Covid since then. I kind of wince at the word Covid now, not out of trauma but because it’s the houseguest that won’t leave. The people closest to me — the people who have washed my hair in times when I have had to drape a bath towel over the biggest mirror in the house because I am not who I want to be — they still go to work and bars and cinemas. They have to and also they want to. Fine. Next week, I have that appointment with the cardiologist that I’ve waited 6 months for. The Long Covid doctor who referred me said that the cardiology department in Liverpool are sceptics when it comes to POTS, a condition that has doubled in cases since the beginning of the pandemic, and one that means I am having to write this text in short bursts from bed. I hate this bedroom and its sepia light that means even when it’s clean in here, it doesn’t look it — but I would hate any bedroom I had spent so much time in, even one that is always home to the sun.

Whether it is delivered to people in documentaries or doctor’s appointments, witnessed at home, or shared with politicians in huge campaigns, I just don’t think the truth is enough. If it was — if it was common, felt, household knowledge that anybody could become disabled to the point of wanting to kill themselves after they got a simple flu — the entire world would rearrange itself to avoid falling into the same desperate pit. And somehow, that claim is boring too. I don’t believe myself. Writing this is boring. It’s boring to make other people feel bad about their choices. I am talking to the wall, but I am also a wall. The very worst truths, truths that are tight and well-documented and shared by eye-witnesses, are ignored because they are far too true for any of us to bear. Have you ever been so wronged by someone that you can’t even say their name anymore? It’s so much easier to pretend they don’t exist.

When the credits rolled on Unrest, I thought it wouldn’t have been boring to me if it had been a horror film instead; if that person who wronged me, who I would blank if they walked past me on the street, was chasing me down hard with an axe in one hand and an old video of me doing kung fu in the other. Unrest would have made for a great horror, based on a true story. There are already so many lines in the documentary that could be recycled for a horror script. In a waiting room, Jennifer’s husband says, ‘one has to be careful. If you say too little, they can’t help you, and if you say too much, they think you’re kind of… a mental patient.’ It’s scary because there’s no way to win. When clinical immunologist Nancy Klimas is interviewed, she explains that, ‘Inside every cell there’s your energy making machine. It’s called the mitochondria. In this illness, each individual cell can have real problems capturing the things they need that your body uses to make energy, like oxygen and glucose. At a cellular level, you become less and less effective, like a wound down clock.’ Jennifer says, ‘If our neurones don’t have enough energy, we can’t think. If our immune cells don’t have enough energy, we can’t fight viruses, and if our muscles don’t have enough energy, we can’t move.’ It’s scary because the villain is inside and wild. There’s also, ‘I just thought I would have more time,’ and ’I’m watching my life disappear.’ Words I’ve probably said myself.

One story in Unrest documents a man who leaves his wife because he doesn’t believe she is really ill; he comes back full of apologies when their daughter develops the same condition. Another story tells us about Karina Hansen, a woman in Denmark whose diagnosis of ME meant she was institutionalised and not allowed to see her family, because Denmark is a country that views the disability as a form of hysteria. Do you remember the nurses who told me I had white coat syndrome again and again? I can see a scene in this new horror film I’m devising where I’m forced to clap for them until my hands are red raw and I’m sobbing. I can imagine scenes of lone bodies in dark bedrooms all across the world waking up from Freddy Krueger nightmares, only to find the curse continues in their waking life. Think of all the horror tropes I could use, or play on. A body so fatigued it can’t even scream. A house that looks totally haunted and abandoned, but it’s just because the person inside can’t move to make themselves known; a person so ravaged by illness that they look like a ghost or a monster. I can see it being a survival horror story, you know, don’t die before help arrives. The virus spreading so quickly and so thoroughly that the only scientists who could do the research also die out before they ever make a cure. I could call it something mysterious, scientific, all caps. Like, Suspiria or Insidious, DYSAUTONOMIA could work well, referring to problems with the autonomic nervous system. The funny thing is, not a single moment of its fiction would even have to be a lie.

The Unrest documentary delivers information about chronic fatigue like a news article or a wikipedia page; a flat surface that leaves no room for drama. I think we need the drama. I suspect it’s all in the delivery. I have shared my own boring data with doctors, reading from the Notes App on my phone and watched them have absolutely no reaction. In the first year of my illness, when I was still more entertained than bored by what was happening, I told friends and family about my symptoms like I was dishing gossip, new gory details emerging all the time. I never felt the need to lie or exaggerate. Although I was telling both parties the truth, only the friends and family side was gripped and sympathetic. I get why. One form was a report, the other was storytelling, and like an audience following the battered character in a five-act tale, the only people who cared were the ones who saw my character completely change.

Unrest was boring to me because it didn’t attack, it didn’t threaten; it pulled its punches and licked its wounds and that’s fair, and it’s middle class I suppose, and tired like the illness itself. I don’t think it should have to twist itself into a new shape in order to successfully provoke an audience. But when every doctor’s appointment is a whirlwind showdown of who knows more than who, or a speed-date where your medical future depends on how well the two of you get on; when we as sick people feel a responsibility not to terrify the naive healthy who still have time to enjoy their lives; and when I ask my boyfriend to stop asking me how I’m feeling because, really, I don’t want to keep having to tell him the truth; there really is no good opportunity to tell a proper story, one that could irrevocably change the witness, or the whole world, or save us. We might need to trojan-horse the truth of chronic fatigue into a horror film.

Chronic fatigue is a difficult topic to create any media around. It’s too much of a slow burn to make for a good episode of Grey’s Anatomy. But to that end, I note how plain Unrest is in its presentation, because I do think art could have helped turn the boredom of chronic fatigue into an imposition on the audience. A purposefully flat, heavy, immovable piece of film could have imprisoned the viewer with some heft. Made them stare at those walls. Pinned them to the seat. Brought their heart rate down too low. Used boredom as a tool to terrify people, and noted boredom as yet another source of pain. And fine, it’s probably unfair of me to use a review of the documentary to imagine another film that would better suit my needs. But as always, this is only partly a review of something someone made and mostly, it is a way for me to make sense of myself. Two out of the last seven days have been spent numb in bed. I am interested in how to make this half-life entertaining to others because even though I’m bored of it, we still need your attention.

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