On Being Ill, Again

I barely wrote in the last month. I was too out of it. The fatigue and confusion caused by my inflammatory bowel disease made making sense of the illness impossible. Now, on the edge of recovery, I want to try piece things together.

Virginia Woolf helps. In 1925, after having a nervous breakdown, she wrote an essay trying to figure it out, called ‘On Being Ill’. It’s an anchor for anyone finding themselves alone and confused in illness. We owe a lot to the feminist movement that revived Woolf’s work in the 1970s.

It was, and still is, a strange work because -as she starts by explaining- the modern preference for ideas over feelings made writing about illness a rare thing. But -as she shows through writing such a thing- the experience of being ill dissolves the idea that a mind can be separate from a body.

Some of the conclusions she draws are wonderful. Some are challenging. And some don’t translate across the 20th century. But all of it provides a good place to start to think through what, if anything, a painful and lonely month in bed can mean.

First though, here’s a bit about what that’s like.

Day one of relapse 19 — Just a few small cramps, slightly dry eyes and a loose bowel movement (as the docs politely put it). A barely registered, ‘a oh god please let this not be another…’ These blips happen often and have only amounted to anything 18 times in 8 years so…

Day four — Symptoms worsen. Denial and acceptance have it out, both claim victory throughout the day. The fatigue’s not here yet, but my body’s absolute failure to digest food promises it soon. Now, there are things I can do. There’s a lot to try: foods to avoid, rest, exercise, supplements. The planner comes out. I get an app.

Day ten — Nothing’s worked. Maybe I started too late. Guilt and helplessness creep in. A ‘why me’, ‘fuck’, deflated ’are you kidding’ kind of thing. There’s a new reality demanding recognition. The old world of energy, conversation, work, parties, play, any kind of spontaneity at all, I have to say goodbye to it for an unknowable amount of time. An invisible judge, out of nowhere, has convicted me and promises to revisit the case when he gets a chance. But he seems busy and forgetful. A new world of bedrest, short walks and hours of restless sleep beckons.

Day eleven — A new resolve, an acceptance, a willingness to rest and even the possibility of enjoying it: I might be able to learn something with all this new space. I settle in. I make new plans. A reading list. A watching list. Light tasks to stay active. Some gardening maybe. Spring’s not that far off, is it?

Day thirteen — Feel okay actually, wonder whether I assumed the worst too early. Perhaps I’m not as ill as I thought. Maybe the idea of staying in bed was actually quite appealing and I jumped to it too soon.

Day eighteen — I wake up and someone has stitched weights into the lining of all of my clothes. I can barely see either. I have slept for 11 hours in 3-hour toilet trip intervals. I cannot not be thirsty. Conversations drain me. Silence drains me. This is the prison the judge sent me to. He seems to have left with no signs of him returning. No chance of appeal.

Day twenty-one — In a small window of energy and concentration, I read an essay by Virginia Woolf written in 1925 called ‘On Being Ill’.

The body plays second fiddle to the mind, she starts. Even experience tells us otherwise: “all day, all night the body intervenes; blunts or sharpens, colours or discolours, turns to wax in the warmth of June, hardens to tallow in the murk of February.”

Meanwhile, “the creature within can only gaze through the pane — smudged or rosy”. Or rather, illness fucks with your head.

If we’re going to make sense of it, we’ll need help. We’ll need tools, says Woolf, including “a robust philosophy” and “a reason rooted in the bowels of the earth.”

Without these, we’re lost. “This monster, the body, this miracle, its pain, will soon make us taper into mysticism”.

Day twenty-three — Smudged, yes. Smudged, smeared, covered in a dusty grime. I am like a character in a film where time has frozen. Like everyone is frozen as I move around them, except it’s the opposite. Time has sped up. Everyone moves fast around me. It is like being a slow-growing plant. This is how trees must feel all the time.

Day twenty-four — Someone asks me how I am. I think they want an answer, though it’s hard to tell. “Pain”, “fatigue”, “dizziness” are some words I use. But what I can’t get across is the trippiness of the whole situation. I cannot describe how my moods, emotions, and physical discomforts have gotten tangled like a kite line, that sometimes I feel totally responsible for how I feel, and sometimes I feel totally powerless to how I feel, and that at either time I might feel hopeful, terrified or completely depressed. It is hard to articulate the loss of my self accompanying this flare-up. And then they moved the conversation on quickly anyway.

Illness is a lonely place. Woolf, in a bleaker moment, rejects that it’s possible to ever connect across the gap. In her illness, she discovers a fundamental and irreparable separation between all of us. “We do not know our own souls, let alone the souls of others,” she says.

“Human beings do not go hand in hand the whole stretch of the way. There is a virgin forest in each; a snow field where even the print of birds’ feet is unknown. Here we go alone…”

Day twenty-six — I can see things differently from here. It is like lying flat on the ground and looking up. It is like being a child again. All the adults are bustling around; I’m just trying to find the most comfortable spot to watch from. Tasks must be soothing. Chat must remain light. No energy is to be wasted translating or modifying the internal to match the external…

Or, as Woolf writes, when we are ill “we cease to be soldiers in the army of the upright; we become deserters. They march to battle. We [are] able, perhaps for the first time for years, to look round, to look up — to look, for example, at the sky.”

I feel connected to her experience here, even though she felt utterly alone there.

I wonder whether the incommunicability of illness and the way that it makes any form of communication feel hopeless, could, bizarrely, be a starting point for connection. It might be something about the impossibility of perfect connection making imperfect connection thrilling. While the possibility and the pain of disconnection fuel the impetus for reaching out across the void.

A friend sits next to me and I manage, somehow, the correct sequence of words. It just clicked together. They nod and their eyebrows lift and eyes open a fraction.

These small moments of connection add up. And there are days of illness when everything comes to a head, the monotony and boredom cracks open like an old skin and the world looks new.

Day twenty-eight. My days are slow and mostly empty but for small tasks. I painted the vegetable bed, watched gardening videos and planted courgettes. I also turned the compost.

…Days like these (pain temporarily at bay and thoughts managing to coagulate) I can believe a more mystical interpretation of this shit. Why, in the middle of an intense climate campaign (Just Stop Oil), doing what I think is good work with good people, would something like this happen? What if all of this is happening to me right now as part of some bigger thing? After all, it is a too fast, too stressed, too distracted style of life that is destroying everything. This fatigue could be an enforced slowing down -an ecological warning- that might ultimately serve some greater good purpose, something I can’t entirely understand.

Pain’s easier to deal with if it’s part of a bigger story. This is one of the deceptions of being ill. There’s a new desperation to make it make sense.

Woolf warned of this. This is what she meant by the a ‘mystical tapering’. I’ve been duped by the illness, she’d say, seduced by a good story.

Instead, hard-headed, she concludes the opposite to me. Where I long for some bigger sense, she senses a bigger senselessness:

“It is only the recumbent who know what, after all, nature is at no pains to conceal — that she in the end will conquer; heat will leave the world; stiff with frost we shall cease to drag ourselves about the fields; ice will lie thick upon factory and engine; the sun will go out.”

Gazing at clouds and closely at a rose, she observes “nature” as totally “indifferent” to us.

This is harder to swallow in our times. The distinction between humans and ‘nature’ may have been easier to buy in London in the1920s, but in 2020, clouds remind us of the dominant civilisation’s impact on the atmosphere, and equally -with the help of indigenous writers like Robin Kimmerer- plants remind us of how integral we are to ecosystems thriving. The separation is harder to sustain.

I need help untangling this.

Rupa Marya, a doctor and Raj Patel, a political economist, step in. They offer something much closer to “a reason rooted in the bowels of the earth” than Woolf could have because they have a wider understanding of indigenous wisdom, anatomical knowledge and political theory.

Last year they published Inflamed: Deep Medicine and the Anatomy of Injustice, a 300-page exploration of how our shit health is caused by the way hundreds of years of colonial capitalism has meticulously destroyed our thriving relationships with the rest of life on earth. Their opener takes us to the heart of the problem: “Your body is inflamed”, because it is “part of a society inflamed”, and, “as a consequence, the planet is inflamed”. All of these layers are intricately connected.

Inflammation, the cause of my illness, is how our immune system tries to protect us. But when it is overstimulated it can flip into chronic states, where the inflammation doesn’t stop. This accompanies most illnesses including “heart disease, cancer, inflammatory bowel disease, Alzheimer’s, depression, obesity, diabetes, and more”.

Stress, depression, toxins in our food and water systems, meat from animals raised in hellish conditions, and a torrent of other aspects of modern life are sending our immune systems into overdrive and not letting them recover.

Day thirty, also known as one month later. Pain, boredom, pain. No possible reason for it. No silver lining. Pure waste. Pure, avoidable, malicious seeming waste.

From here, the bleak emptiness of illness is the illusion. My illness is not an accident. It is not a bodily failure or a tragic bit of chaos. As Marya and Patel put it “the inflammatory diseases we are seeing today are not the cause of the body’s dysfunctional reactions. They are the body’s correct responses to a pathological world.”

And, as they meticulously demonstrate, the people who are more exposed to stress, poor quality foods and environmental destruction are the people who work the worst jobs, for the longest hours, with least support, in the most heavily colonised places.

With illness contextualised, healing stops being an individual problem. And vice versa, just as in the smaller crises you can see the broader crisis, in the things that heal you can see what it will take to heal things at large.

In the NHS, in rebuilding healthy bacterial ecosystems, in the comfort of plants and the support of friends: healing is a collective journey. And illness, chronic or otherwise, isn’t simply a bad problem to be solved. It offers a window into the nature of the world, our own place in it, our connections and our disconnections.

As Marya and Patel point out, communities of care are part of a decolonisation that includes dreaming of a better relationship with life: “Deep medicine requires new cosmologies, ones that can braid our lives with the planet and the web of life around us. The anatomy of justice stretches from the hospital to the forest, from the ocean to the school, from the prison to the sky.”

From here, Woolf’s gazing at the sky and finding only indifference seems part of the illness, the separation part of coloniality.

Perhaps though, if she were here, she’d describe her distance from the sky as the basis for connection with it. Parts of her description of the awe of staring closely at a rose or widely at the clouds, remind me of Marya and Patel’s urging of us “to become humble once more in the face of life’s greater intelligence”.