Being in pain

Notes on the gulf between you and me

Fuyuko Matsui’s The parasite will not abandon the body (Ōsei wa karada o saranai), 2011. Art Gallery of NSW

About four years ago, my stomach started hurting. It would happen at night, and only at night, either just before I went to sleep or a few hours after; waking me up and causing to me sit hunched at the edge of the bed, scrolling through my phone. Scrolling through my phone – that’s a crucial detail. Which apps I used to pass the time, and later, whether I could focus my eyes on the screen, were the two metrics I used to track my pain. But from the very beginning I was reduced to that passive act: unable to follow a movie or read a book, scrolling was all I had to distract myself.

In the beginning it wasn’t so bad. The episodes were irregular, and the pain, while enough to keep me awake, was not excruciating. Then, later, when things definitely were bad, I didn’t want to acknowledge just how bad things were. That’s life, I figured. I identified as a healthy person: a bit of pain wasn’t going to change that. And, anyway, lots of people had it worse than me. My pain wasn’t even dangerous – doctors were keen to remind me of that. There’s nothing wrong with you, really. You’re just in pain.

Just being in pain never felt like a good reason to complain, and the world was full of more deserving people: people who are actually diseased; who live under financial stress; who stand up through the workday. Three decades of shame about how lucky my life has been meant I intended to make no claims on the world around me. Experiencing discomfort without complaint was, in my mind, one way of redeeming myself.

But over the years that nocturnal ache increased in regularity and intensity. What was at first monthly become fortnightly; then weekly; then, by the end, almost nightly. There were, of course, peaks and troughs along the way. I ended up in the emergency room four times. Alone in Tokyo in 2019, I found myself in the lobby of my hotel room, on my hands and knees, desperately hoping the monolingual night clerk would understand enough English to call me an ambulance. In Queensland, in 2020, a few months after fleeing the covid outbreak in New York, my mum drove me to hospital after the pain lasted hours longer than it normally did. In Mexico City, in 2021, my partner Jane used all of her university Spanish to translate me through a public hospital waiting room in which other people’s blood on the floor had long ago crusted brown.

Then in Brooklyn, two months ago, I experienced an intensity of pain I didn’t know my body was capable of producing, a literally blinding sensation that shut down every sense in my body except the sensations of my stomach. The pain had many times been excruciating before – I want to emphasise that. I really want to insist that for years I was experiencing agony. It just happens that this time I discovered a new level. Jane was away for work and I, who had long ago stopped going to the emergency room, having learned that they could or would not do anything for me, crawled in desperation to the hospital at the end of my block. It was was nearly midnight, and I shuffled down there, bent over horizontal to the footpath – the 100 metre walk took maybe 10 minutes – checked in, and immediately realised I’d left my phone in my apartment. Jane was due to return home any minute – she’d have no idea where I was.

I knew that emergency rooms could or would not do anything for me, but there is another reason I had stopped seeking their help. It was the indignity of it. The sheer visibility of it, the cold floor, the uncomfortable chairs, the hours and hours of waiting. My episodes normally ended around sunrise – by the time a doctor saw me, the worst would have passed. That night, in Brooklyn, rather than sit in a public room crying and sobbing for 4 hours, I went home.

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After the first year of pain, I started taking notes whenever I had an episode. Here are some of my notes from that night, unedited:

slight discomfort starting 7pm after hard day at therapy (first felt the twinge there), also had two glasses of wine two nights ago

Made myself vomit at 9.45 as pain got worse. Then pain even worse. Severe

Fantasying. Committing? About going back to Australia’s to convalesce

Vomiting staying at 10.05

10.50 vomit again. End of stomach contents. Pain let’s up a little

11.10 vomit 4th time. I am in excruciating pain

Vomited twice more. Bile

1.00 still extreme pain

Coming vomiting cominitjng

1.34 a moment’s reprieve

So exhausted that I passed out despite pain. Woke up 1.47 and vomited

2.11 more vomiting, pain subsiding but significant

2.34, same

E basically sleepwalking at this point

Have been drifting off for 10 minutes then going to vomite ona. Cycle m. Now 4.20am

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So, four years of this. In the third year, after an endoscopy and a series of scans had cleared me for anything “serious”, the advice given to me was, essentially, this:

Look, some people just have trouble with their stomachs. When they have trouble and we don’t know what is causing it, we just call it IBS. So you have IBS. Watch out for foods that might trigger you, and good luck.

I scoured the internet for solutions. I came across little micro communities of people suffering from similar problems. One of them gathered around the diagnosis of gastritis – inflammation of the lining of the stomach. It seemed plausible to me – the endoscopy had shown mild gastritis; not enough to cause my symptoms, but it was the only thing I could find that even approximated what I was going through. With no guidance from the doctors, I started following the advice of the internet.

I started to eliminate suspicious foods from my diet. Alcohol had already gone – by 2020 I was essentially sober, fearing it could aggravate things. Caffeine went, then spicy foods, then sparkling water, then alliums, then any food with a ph under 5. For three months at the beginning of 2022 I essentially lived on bread and water. I was desperate – food was the only thing left for me to control. And yet still the pain came.

In the end there were 3 different GPs, 3 different gastroenterologists. Probably about 20 appointments over 4 years. With each interaction my respect for the medical profession diminished: the GP in China diagnosed me with heliobacter pylori, but declined to test for it. In New York, the GP refused to refer me to a gastroenterologist: having recently taken antacids, she said, the gastro would be unable to confirm anything. In Australia, a gastroenterologist insisted that I have my gall bladder removed; I told him my symptoms didn’t align with gall stone pain, and walked out.

Oh, and: twice now, my GP here in Australia has just straight up not read letters from my specialists – it’s only by rapidly reading the documents over his shoulder that I realised his recommendations were wholly misdirected. When I pointed this out I was careful not to embarrass him: after all, this was the man who keeps the gate to my care.

After four years I started to feel that I had been misinformed about the role of the doctor. I’d been told that doctors were people who looked to heal you when you were sick. But as the years went by I came to see them more like a barrier to health. In cases like mine, I started to feel, it’s the responsibility of the patient to manage the doctor – not the other way round.

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When I came to, the morning after that horrific episode, Jane looked me in the eye and said what I needed her to say: that I needed to go home. You can see in the notes above that I’d already decided as much in my delirium.

I’d already resisted the idea for months and we assumed then that I would never be coming back. But I was out of options in New York. I needed a healthcare system I could access without fear of surprise bills; I needed to put aside all career aspirations; I needed my family’s support. I needed to prioritise my health at the expense of everything else in my life. So I made a plan with my doctor friends (thank god for them) and directed myself to the singular goal of getting better.

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A famous problem for philosophy is triggered by the question ‘what do we know?’ Descartes felt like he had found at least one answer for it: cogito ergo sum. I think, therefore I am. That answer helped philosophers feel that our skepticism could not be unlimited, because we had certain knowledge of ourselves. But it left open the question of our knowledge about everything else; our knowledge of the external world.

One mode of handling external world skepticism is to acknowledge its wisdom – there is no “proof” available to us to refute the skeptic. But we can be comforted by observing that no one is a skeptic for long: doubts about the external world are something you can take seriously only in fleeting moments of philosophical effort. All of us, as soon as we stub our toe, eat a peach, or hug our friends, are returned, inevitably, to the business of being in the world. We inescapably take the world to be real.

Consider now a third type of skepticism: skepticism about other minds. I’m confident I exist. I’m even happy to believe that the world exists. But why should I ever believe that other minds exist? Why should I think the human bodies around me are populated with such a thing as feelings? And do I know anything at all about the experiences of others? Wittgenstein, and later a philosopher called Stanley Cavell, took this problem very seriously. And in Wittgenstein, significantly, the operative example is of a person in pain.

Imagine your friend turns to you. He is bent over, he is groaning, his face is contorted in anguish. He says to you: ‘I am in pain.’ You want to understand; you do everything to imagine what this experience is like for him. But you find that you cannot quite get there. Despite your efforts, you realise you must fall short. You can never know what he is experiencing.

Once you realise you can never grasp the magnitude, nor the quality, of your friend’s pain, your doubts start to proliferate. Can I say he is in pain at all? Could he be faking? Could he actually be expressing pleasure? What if he feels nothing at all; what if he is an automaton, a zombie, a golem?

The answer, for Cavell, was not unlike the answer for the external world. The truth about our human relations is that it takes immense effort to see the other as an automaton, a zombie, a golem. Instead, we inescapably project humanity into them. When we come across an anthropomorphic body expressing itself, we cannot help but take that body as human. When we see our friend writhe, we immediately know that he is in pain, whether we know the details of it or not. We inescapably take the world to be real, and we inescapably take other people to have minds.

‘The human body,’ says Wittgenstein, ‘is the best picture of the human soul.’

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When I studied this problem back at uni, it felt to me the most important thing anyone could ever think about. All of art, of society, of human relations, seemed to flow from this base fact about the world: there is a gap between you and me, a gap we can never cross. But when I was in pain, I found the problem of other minds plaguing me like never before. All of us experience occasional doubts about our ability to understand others, but profound pain is the experience, I now think, that makes those doubts unavoidable.

But when it comes to pain, there’s a difference. Where the philosopher in her armchair wonders whether other minds exist, the patient on the hospital bed experiences the problem of other minds from the other side. The patient in pain does not stop to doubt his ability to know the experiences of others. He doubts his ability to make his experiences known. He wonders: do they take me for an automaton, a zombie, a golem?

In a beautiful and sad note about her own pain, B.D. McClay writes this week:

Before you get your pain meds, if you’re sitting around in the emergency room, you’re hearing a lot of screaming, and maybe you are also screaming, though in my case I mostly kept looking at nurses and saying please, please, please. Saying this to the nurses is part of an elaborate ritual because they won’t help you until it’s your turn and they know it and you know it but you are very afraid of being forgotten.

You are very afraid of being forgotten.

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Pain tears you from the people that surround you and leaves you all alone, renewing your fears about the gulf between you and me.

But I have not yet given you Cavell’s full story. I told you that Cavell claims we can’t help but see others as humans. And yet, you and I both know that we routinely forget the humanity in the people around us. Why should anyone fear being forgotten, if we can’t help but see the humanity in them?

Cavell will say, and I think it is as good a model as any we currently have, that we cannot help but know that the bodies around us are human; we cannot help but know when someone is in pain. But there is a catch. That immediate, inescapable knowledge presents as a call upon us: a moral, interpersonal, intersocial call to attend to the full humanity to the other.

To answer that call, in Cavell’s words, would be to “acknowledge” the humanity of the other. And we must admit that the call to acknowledgement is fundamentally a burden; a burden we are prone to hide from. We are thrown into knowledge of other people, but shield, deflect, dodge, and dismiss our way out of acknowledgement of them. It would be too emotionally and morally burdensome to fully acknowledge one person, let alone all people. Full acknowledgment, if such a thing exists, might be called love. Our refusal to acknowledge each other might be called the avoidance of love.

And it is this acknowledgement that one craves in the solitude of one’s pain. What we want, need, is for that pain to be both known and acknowledged, seen and seen. But – and I want to insist on this – more than he craves acknowledgement, the pained man fears unacknowledgement. I was very afraid of being forgotten.

It turns out that it is worse to be seen and ignored than never seen at all. And now I understand that for years, I hid my pain for fear it would go unacknowledged. I told you earlier why I avoided emergency rooms, but I left this bit out. Unacknowledgement is the real horror of the emergency room: that your pain is right there, so visible, so transparent, and the nurses just fucking sit there.

When you are in pain in the emergency room, your dignity falls away. But your dignity falls away not because you are crying and writhing, but because you are crying and writhing and you remain unseen. The staff know you are in pain but have learned to, work hard to, never acknowledge your pain.

In unacknowledgement you are made to bear it alone; no man is an island but you are made an island; you are cast out; your cries fall on deaf ears. So you go home.

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Two years ago, Jane’s stepdad, who is a neonatal doctor and not in any way a gastroenterologist, made a diagnosis over dinner. You’re stressed, he said.

I did not take him seriously. Among my reasons were his history of mysterious, incredible, but extremely-not-peer-reviewed medical insights (’home-sickness kills thousands every year’; ‘there is nothing more dangerous than a broken heart’).

The GPs and gastroenterologists hadn’t mentioned psychological issues as a potential diagnosis. My symptoms seemed too severe for that. Who ever heard of a person reduced to crippling agony because they were stressed? Diarrhoea, maybe; debilitating pain, not so much.

On top of it all, I couldn’t see what I had to be stressed about. I was being paid well to do a job that asked maybe 10 hours a week from me. Really. I had the easiest job of anyone I knew. I was financially secure on top of that, and lived in a beautiful apartment with a loving partner. I had no right to the word “stress”.

It turns out there are many types of stress. When I had exhausted every other possibility, even the diagnoses offered by the internet; when I had completed an elimination diet until there was nothing left to eliminate; when I had tried every type of herbal remedy and supplement and prebiotic; when, after all that, I found myself suffering more than I ever had, I allowed myself to believe that it my problem was psychological.

When I returned to Australia and presented my psychological case to my GP, he didn’t believe me. There was talk of possibly-twisted organs instead. Doctors are barriers to good health, I thought. But I bit my tongue, and got my referral to a new gastroenterologist.

The new specialist was a brother of a school friend of mine. He was decades younger than the other gastroenterologists I’d seen. I’d known him for 20 years, and he listened to what I had to say. I spoke for twenty minutes straight. By this stage there was four years of notes, piles of tests, and the opinions of multiple doctors to sort through. When I was done, he wrapped up his notes, looked at me, and ‘Well, you’re right. I think this is psychological.’

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Coda

That last horrific episode, the climax of years of increasing pain, happened in April. I was on a plane home two weeks later.

Since I got on that plane, I have not had a single symptom. The sheer drama of that act, I think, drastically changed how I think about my life, which in turn has dislodged the stresses and pressures that were manifesting in my stomach. Soon I’ll begin treatment – a mixture of CBT and hypnotherapy – but the truth is I think the worst of it is behind me.

I touch wood writing this, but I feel, for the first time in four years, that my pain is subservient to me and not the other way around. It may yet return. God, I hope it doesn’t. But I feel for the first time that I know its cause and that, knowing its cause, I might yet become its master. After years of languishing, I might yet turn the corner. The plan now is to conquer this thing fully; to get treatment, and, in September, return to New York.

Touch wood.