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“I can’t imagine the person I should be with, to be honest,” I say to my mother. Someone who does not need me so much as actually wants me around, I guess. But there are other things which have, in the past, both enriched and threatened romantic relationships. There is my gender and sexual identity, which does not exactly fit with dominant (straight) culture or marginalised (queer) culture. And there are my feelings, which are sometimes ill or disordered or difficult, meaning I am sometimes ill and disordered and difficult. And there is my writing, which represents my own experience but does not really belong to me, and contains the things people say to me, and might expose them in exposing myself.

“You need to go out with a Tove!” my mother says, meaning Tove Jansson, who also wrote about her own experiences even if they were refracted through characters. We are both reading her novel Fair Play. My mother’s copy was a gift from her ex-girlfriend, who she suspects was given it by someone else because the title page – where the previous message would have been written – has been ripped out. As I read my copy of the book, short chapter by short chapter, I imagine my mother having read the story already, also alone, also maybe propped up in bed, a dog curled up wakefully asleep beside her. Fair Play is not a conventional love story – it contains so much work and difficulty, so much talking through that difficulty, and walking around an island alone as a way of deciding something.

“But that would be like going out with myself,” I respond to my mother’s suggestion, and I don’t know how much of a good idea that would be either. (She imagines Frances from Gardeners’ World as my “ideal girlfriend”, which we agree is embarrassing for both of us.) But Tove is not like me at all – she is so much braver, travelling across Europe on her own, and less ill of course. When she went to Paris to study, Tove was more scared of the initiation rituals than a lack of the energy needed to keep up with everyone else.

The “Which Moomin character are you?” quiz he finds on his phone is illuminating. I am more impractical than practical; tend to choose somewhat impulsively; would rather stay at home, wear colourful clothes, and be alone. He decides I am warm-hearted rather than cold-headed because I am cold-hearted and warm-headed, which isn’t an option. Inevitably, I get Moominmamma: “You enjoy celebrating together with your loved ones, but you also want to find time for the peaceful solitude.”

My mother always called me Little My, the moody child, who lived with the Moomins in Moominhouse without being related to them: “fiery and irritable – but also happy and friendly.” He doesn’t say his answers – practical, sensible, adventurous? – out loud, and I can’t remember which character he gets, but the description seems accurate enough to both of us.

I don’t know how peaceful my solitude is.

Not all of us are governed by clock time. Not all of us can keep up or “keep time” with the rest of the orchestra. As an alternative to clock time, crip time can be a useful concept for the chronically ill. Crip time is the extra time needed to do something or the time waiting for transportation to come. It is unproductive time – time wasted. And it is flexible time, the kind of time that bends to meet disabled body-minds, the kind that is unfixed, warped, bent, queer.

Alison Kafer, in her book Feminist, Queer, Crip, defines crip time as a shift in mindset: “Rather than bend the bodies and minds to meet the clock, crip time bends the clock to meet disabled bodies and minds.” Crip time is “flex time not just expanded but exploded; it requires reimagining our notions of what can and should happen in time, or recognizing how expectations of ‘how long things take’ are based on very particular minds and bodies.” Illness and disability can cause time to slow. It might be experienced in bursts or waves, shifting in and out of straight time, “whether straight time means a firm delineation between past/present/future or an expectation of a linear development from dependent childhood to independent reproductive adulthood.” Crip time is a departure from straight time and the normative life course, a linear chain of events from birth to reproduction and finally death; a structuring of time centred on reproduction and family, but also ableist norms. We move and think at slower (or faster) paces than culturally expected, and our lifetimes look different. Likewise, our stories are different – warped, bent, sick. Like clock time, the conventional medical narrative is linear: it begins with symptoms and tests, continues with overcoming diagnosis, and ends in treatment and recovery. But these events can happen in any order, any number of times. A diagnosis does not necessarily lead to treatment and recovery; new and unexplained symptoms can arise at any time; you might relapse; you might not recover.

In a 2017 essay, Ellen Samuels describes “Six Ways of Looking at Crip Time”, and not all of them are positive: “Crip time is time travel. Disability and illness have the power to extract us from linear, progressive time with its normative life stages and cast us into a wormhole of backward and forward acceleration, jerky stops and starts, tedious intervals and abrupt endings. Some of us contend with the impairments of old age while still young; some of us are treated like children no matter how old we get.” In this sense, Virginia Woolf described crip time when she wrote in her diary that periods of illness were “partly mystical” when, “Something happens in my mind.” But crip time is also grief time, “a time of loss, and of the crushing undertow that accompanies loss”. It is broken time; it means “listening to the broken languages of our bodies, translating them, honouring their words.” Finally: “Crip time is writing time.” Ill Feelings exists within this paradox, in which illness is both obstacle to writing and its aid.

“The morning” is another name that just stuck; it can happen at any time of the day. My morning happens at around 3.30pm, when I shower after a nap. I take notes at completely random times of the day. I write – if you can call putting those notes into this document writing – in bed before I try and sleep, or straight after I wake up. Right now it is 12.16am.

“I spent so many years trying to bend to clock time,” I write to artist and writer Abi Palmer in an email conversation for another publication. Our correspondence is conducted in crip time, written in bursts at 3am or lying on the sofa in the afternoon, with a clock-time deadline: 16 July 2021 – whatever that means. “You have to learn to accept you will come across as flaky or useless or lazy – just because you’re resting or you’re on this other weird kind of time,” I continue. Even if working and living on crip time, you still have to be aware of clock time – there are still deadlines and meetings you have to have, and your pill packet still says the days of the week on it. “It’s easy to feel like you’re always in its shadow.”

Abi says her book Sanatorium became “a fragmented and ripped apart thing” because every time she had to stop writing or talking, there was a gap: “The voice keeps switching tones because the body and the mind keep intruding on each other.” I made Ill Feelings a flowing account in an attempt to construct an alternative to the linear medical narrative, to make it bend to crip time.

“How old are you, 31?”, the physiotherapist said to me during our specialist outpatient clinic appointment at which I was given the name fibromyalgia. “You’re still young; you should be able to do what you want to do.” Much of the conversation around treatment and managing long-term conditions in medical contexts is about getting you back to living as much as possible on productive clock time, which means getting you back to work. The same physiotherapist asked us all what we wanted to be able to do again in one of the group hydrotherapy sessions I later attended, in which she discussed the importance of setting goals for ourselves.

“Dance,” said one woman, an answer I found beautiful. She could have said, “Get up and go to work”, like the physiotherapist suggested, but she wanted to dance – to keep her own time.

In “How to be a Person in the Age of Autoimmunity”, artist Carolyn Lazard writes of being told they are too young to live as a chronically ill person: “‘What a shame! We can get you back to work! You should be out living your life!’ And so, they perpetuated the supposed narrative of health and death: illness is something which comes late in life, right before the end. They acted as if I was experiencing an inconvenience. As if I wasn’t living my life anyway. They didn’t understand that this experience had stripped and shed a light on me, making it simply impossible to carry on as before. There was no return to ‘normal’.” Biomedical treatment insists on clock time, which is a capitalist understanding of time. To their doctors, getting Lazard back to work as quickly as possible is the only ideal outcome of treatment: “It is the body’s radical autonomy that resists commodification. To spite our optimal productivity, it gets sick.”

Lazard’s film CRIP TIME (2018) is ten minutes of filling weekly pill organisers separated into daily compartments, each with four chambers, labelled with times of the day: morning, noon, evening, bedtime. This is ten minutes of wasted, unproductive time, but it is the names for the times of day on the pill boxes that come off as meaningless. They are names for linear time that assist Lazard in their life lived on crip time. Aren’t the days of the week and the times of the day just the names that stuck? The names on Lazard’s pill boxes have even faded through use.

I open the door and he is there without the dog. He’s going to the corner shop to get milk and can’t stay long because a car mechanic is coming to look at the van. I ask him if he usually wears a watch, as I haven’t noticed him wearing one before. “No, this is my new thing!” he replies. The watch measures his resting heart rate and how much effort he’s putting into the things he does, like playing football or cycling or walking the dog. It measures how often he is stressed (four minutes today so far), and how well he slept. It says he’s walked 6,000 steps and it’s only 9am.

He’s most interested in how the watch records his “body battery”. Your body battery recharges with rest, and if you do things to improve your fitness, like go for a walk, your body battery also becomes more “resilient” over time. The watch says you must rest, but you must also walk; it says you can improve the resilience – implying toughness but also flexibility, an ability to adapt – of your own energy resources by doing more, rather than resting more. I think of getting my own watch just to see how resilient my body battery is.

Would it think I rest too much, or I am truly as drained as I feel?

The James family had a “bank account” theory of ill feelings, believing that not only was suffering contagious, but that it could also be “paid for” by another sibling’s well-being: “I have invented for my comfort a theory that this degenerescence of mine is the result of Alice and Willy getting better and locating some of their diseases on me,” wrote Henry in a letter home from Europe in 1869, “so as to propitiate the fates by not turning the poor homeless infirmities out of the family. Isn’t it so? I forgive them and bless them.”

My mother has got to the section about this in my book and tells me she really liked it. When I reread it, it has more to do with crip time than I remember: “Sometimes resting more enables us to keep up, to do almost as much as we are expected to do, that we expect of ourselves, but the terms of our contract with the Bank of Energy are being rewritten every day. You slow down when you feel ill, but that doesn’t mean you can speed up again when you’re feeling up to it. The bank-account analogy is useless when how well you feel depends on your medication working or changing, and how badly it affected your sleep the night before, on whether you walked too far or not far enough, or you feel hurt, or confused, by something someone said to you.”

How much energy does it take to write about what happens or rather doesn’t happen? I type this question into my phone, having overdone it at the weekend, travelling down to Hastings with friends to do a reading for Independent Bookshop Day. I’m not used to being around people for so long – talking and listening and seeing and being seen – but it is also nice to talk and listen, to see and be seen. I spend so much time on my own, not speaking or being seen, and I realise that if the things that happen are not interesting, I will not write them down – so there is automatically a gap of days, even weeks, that go by unrecorded. I am not following the rules of my own experiment; I am not writing about what doesn’t happen. “I feel like an alien, useless, pointless,” I type into my phone. “I don’t want to do anything, and I know I have to rest, but it’s hard to see how it would make any difference. When your body battering is drained, you think: what is the point in filling myself back up?”

The medical professor who cured himself from long Covid by thinking positively and not talking about his persistent symptoms is on World at One. He says that if you feel too ill to walk you should go for a walk – that will make you better. Do I not have any energy because I’m not doing enough or I am doing the wrong things? What am I trying to get back to anyway? Would my body battery have been recharged if I had taken the dog for a walk today?

A new study from King’s College suggests fibromyalgia is a result of an autoimmune response, rather than Sundial abnormal levels of chemicals in the brain. I wonder when this will become accepted knowledge, and how long it will take to impact health care. I currently treat mine with an antidepressant that targets receptors for both serotonin and norepinephrine, the main neurotransmitter used by the sympathetic nervous system, and responsible for how the person reacts to stress and anxiety and is associated with the fight-or-flight response. I interfere with the pain signals between my nerve cells, which the specialists tell me not to trust, that the signals are faulty and broken; they are sending pain signals where there is no injury. A man on the radio who has written a book about statistics says to be sceptical of anything reported as a “new study” in science journalism – it just means they haven’t done enough research to confirm the findings. I guess I should stop listening to the radio so much.

The last time my mother and I spoke she said she wasn’t doing anything at all – no socialising, no plans – in a bid to try and improve her energy levels, except now she’s telling me about the lesbian and bisexual meet-up she organised at the weekend. (It was planned ages ago so she “had to go”.) She had bought a picnic chair so she would have a back rest, but when she sat in it someone said she looked like “a teacher”, with all her pupils on rugs, so she spent the whole of the picnic sat on the ground trying to use the chair to prop her back up, even though this made her much more fatigued and stressed. She is still a bit pissed off both at herself and slightly at the woman who made the comment, but she has found the funny side. She only tells me these things when she’s not distressed any more and just wants to laugh about them. I can tell she is not at all well at the moment, and that if she does not improve this will occupy me more and more.

At a panel discussion at Bradford Literary Festival, I talk about all the ways our diagnoses and what my mother remembers doctors saying to her about me were always gendered. The way I was called “naughty”, and she had a “longing to be ill”, as if these were our real diagnoses. Would they have said that if they had gendered us anything other than female? My body battery was drained by the time we got there.

They called me naughty because of my ill feelings, but also because I refused to speak. This refusal was further evidence of my disobedience and my mother’s irrationality. I never wrote down my symptoms when I was a child, never kept a diary when asked. I resisted the potential for any kind of narrative. I didn’t want any evidence as I knew that could be used against me, and my mother. I still don’t really want to write down how I’m feeling, as well as what happens or doesn’t happen, but do so mostly out of necessity. If I type something into my phone, it is so I don’t have to think about it any more. In that sense, I suppose I do lose a sense of the isolation and desolation that abides with me.

I find a question buried at the heart of my book: “Does being in pain make me a woman? Even if I don’t actually feel like one?” This is what preoccupies me now.