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WHILE I WRITE THIS ESSAY, MY PAIN THINKS ABOUT ENTERING A POETRY COMPETITION BY LINDSEY ALLEN 

Published in SICK issue 5, 2023

Lindsey Allen is a writer currently based in Bristol. They recently graduated from a MSc in Medical Anthropology, with a dissertation exploring disabled perspectives on care. She is particularly interested in the crossovers between disability, the environment, and the body—and how people find/create care-full imaginaries within them.

• • •

On New Year’s Day, in 2011, I woke up on the sofa with stomach pain. Over the next few weeks, it spread through my body from my stomach to my wrists to my stomach again, and then into my knees where it planted itself and rooted down. My GP diagnosed reactive arthropathy with a question mark, but didn’t know what to do about it, so I was referred to a rheumatologist, and I waited. A few months later, I got up in the morning and couldn’t stand on either of my legs. Despite the pain, nothing was broken, although I don’t remember the hospital visit where I was told this. About six months later, aged 12, I was diagnosed with complex regional pain syndrome (CRPS), a condition characterised by severe pain.

The idea that pain is inexpressible is one of the central tenants of much writing about and around pain. Elaine Scarry, in The Body in Pain, points to pain’s “resistance to language” as its defining feature.1 Sociologist Arthur W. Frank claims “pain is a black hole into which language seems to disappear.”2 In her memoir, Inside Chronic Pain, Lous Heshusius suggests that “constant severe pain lives in silence”, it is an experience that cannot “come true in words.”3

If we accept this incommunicability at face value, the inability to understand the pain of another becomes inevitable. To claim pain is inexpressible absolves those who belittle it of any guilt: how can you have empathy for something that cannot be expressed? But many of these claims to pain’s ‘inexpressibility’ are followed by books, interviews, and memoirs that express pain beautifully. This is not to say that pain is easy to express. It can escape rational, well-refined words—particularly in moments of acute pain, or in the context of a doctor’s appointment. But even these claims, these metaphors—pain is silent, pain is inexpressible, pain is impossible—try to say something of pain.

At the hospital with my first physiotherapist, I started my own training in metaphors. I remember the room as a blur around a set of parallel walking bars. They were my treatment. As I held as much weight as possible on my hands instead of my feet, I was not quiet or stoic in my pain. I cried, then I sobbed, then I walked to the end of the bars. Even though no doctor has ever told me I am not in pain, it is generally accepted that my pain isn’t telling me anything useful. Unlike a broken bone or a swollen appendix, my pain had not been linked to any physical harm. The physio, the rheumatologist, and the pain clinic all trained in the same direction: ‘just because it hurts doesn’t mean it hurts.’ And so, although the pain never stopped, one day I stopped crying when I walked.

In her memoir, Heshusius writes “One can wince and moan only for so long.” And that may be true, but hiding pain is not necessarily a natural process. At the pain clinic, success is not defined solely (or, at all, depending on the clinic) as a reduction in pain, but as a reduction in the gesture of pain. Walking instead of using a wheelchair, bending your knees instead of keeping them locked, weaning off medication and replacing it with mindfulness. Here, the metaphors are gestural. As in childhood play where a toy truck becomes a telephone when held up to an ear,4 in the pain clinic an otherwise ‘healthy’ leg becomes a ‘sick’ one when you hold it like it is damaged. These ‘pain behaviours’ are usually a way to protect your body from further harm — without the underlying harm, they are no longer protective, but are instead metaphors that can be changed and shaped by the clinic. Just because it hurts doesn’t mean it is hurting you.

No longer expressing these metaphors, regardless of whether the pain is still felt, is one of the ‘cures’ of the pain clinic. However, these ‘pain behaviours’ are also one of the main ways doctors, nurses, and researchers ‘quantify’ or ‘see’ pain. If you are not crying, screaming, or limping, then your pain cannot possibly rank a 10. When the body does not express pain in the expected way, we are left with language.

For both the doctor and the patient, this language is too often not enough. A few years after I was diagnosed with CRPS, after all of this training in metaphors, I went to A&E with an acutely painful wrist. The doctor’s note details that although I said I was in pain, I was able to lift my arm to brush my hair out of my eye. The struggle to be believed is also a consistent feature in writing on and around pain. Particularly for people of marginalised genders, and even more so for women and people of colour, pain is frequently dismissed, undertreated, and misdiagnosed. We are treated as unreliable narrators of our own pain narratives not because pain is not expressed, but because it is not believed.

In an article published by The McGill Tribune in 2017, they dream of their university’s next invention: “maybe it will be the McGill Pain Machine.”5 Between the lines, it seems that this will look like a fool-proof lie detector. This desperation for objectivity and measurement is not new to the medical field, nor unique to pain. However, attempts to measure ‘pain’ reinforce how impossible this objectivity really is. Pain is defined by The International Association for the Study of Pain as an “unpleasant sensory and emotional experience,”6 not a measurement of nerve response or brain circuitry. Our understanding of pain is limited by, and entangled with, perception and emotion, but one thing is certain: it is impossible to separate pain from the patient. Despite wishes for a pain lie detector, the patient and their expression of pain remain its best measurement.

Pain description is littered with metaphors, even in medical institutions. The NHS website, for example, introduces CRPS with a description of “burning, stabbing, or stinging pain.”7  The McGill Pain Questionnaire, one of the key methods by which language is used to measure pain in the clinic, relies heavily on metaphors. An analysis by Elena Semino suggests at least one-third of the descriptors are linked to metaphors of damage (for example, stabbing, tearing, or crushing), while others link pain to extreme temperatures or a “malevolent animate agent.”8 Here, metaphors become a technology to measure pain.

When you search CRPS on Google, one of the first images that come up is the McGill Pain Scale, which ranks different painful experiences from zero to 50 based on the MPQ. CRPS sits just at the top, with a strong showing of 42. As a teenager, I took a crass kind of pleasure in this ranking system. I can’t believe I am doing the washing up during an untrained childbirth. I can’t believe I am sitting my GCSEs in pain worse than non-terminal cancer. I can’t believe I am walking while having my legs chopped off.

I have never had my legs chopped off. I have not given birth. I have never gone through the pain and treatment of non-terminal cancer. Why do I want to know my pain is worse than your pain? I’ve never been stabbed, but still, I use the word stabbing in the doctor’s office. A laceration only racks up 15 points on the McGill scale, but I am sure it still hurts to be stabbed.

When I was thirteen I saw a psychotherapist as a part of a multidisciplinary pain team. Her opener, “your pain is not all in your head”, felt stupid then, and feels stupid now. Clearly, the pain is not all in my head. My pain is all in your head—I am the one who can feel it. Putting the pain inside anywhere is a metaphor in itself. Is pain in me; or am I in pain, on pain, around, or about pain? Like many things, pain undermines the strange body-mind dichotomy that much Western thought still clings to. Both understandings intertwine: yes, my pain is in my body; yes, it is in my head, which is in my body; yes, it hurts regardless.

Diagnoses can also be seen as metaphors, using a collection of signs and symptoms to assign patients to an illness narrative, which they can follow towards ‘cure’. But when someone asks what happened, they are often not asking for a medical explanation. Although, as with many pain disorders, it can be misunderstood or misdiagnosed, my pain is not medically unexplained. But it is unexplained in the way many things are: in the question ‘why?’ Why me, why this tumour, why my heart, why my nerves? In our search for narratives, sickness becomes metaphor. Am I being punished, attacked, betrayed?

Language is more than simply a representation of the world, but is itself a mode of being-in-the-world.9 It not only describes the world around us, but creates it. And if language creates rather than represents, the metaphors we use are also creative. Research into metaphors and the experience of pain follow this line of reasoning: a change of metaphor could lead to increased understanding of another’s pain, or even pain that ‘felt’ different.

So what does it mean that the dominant metaphors used for pain are overwhelmingly negative—focusing on war, punishment, or disaster?

Metaphor is a technology that shapes pain, as well as one that can be used to measure it. Like all technologies, it can be used for wonderful or terrible things. Metaphors are political, and make judgements about what is natural or unnatural, good or bad. Susan Sontag’s critical analysis in Illness as Metaphor explores this in the metaphors surrounding cancer and tuberculosis.10 Sontag makes the significant step to analyse how illness is also used as a metaphor to relate disease to the unnatural: war, political events, the polluted city. For Sontag, the sensible next step is to resist metaphorical thinking around illness—to ‘de-mythicise’. Illness could then be seen and treated for what it was, without these extra negative associations.

Metaphor is not just some extra decoration we add on top of pain. In an interview for The White Review, Ocean Vuong outlines how “metaphors are one of the oldest forms of figurative writing, in thinking and speaking, that our species has ever had.”11 Of course they are political—and they can be terrible—but this does not necessarily call out for a de-metaphorization. Rather, a reformulation. Vuong continues, “the metaphor is also an autobiography, a vision.” The metaphors we use to describe pain in the doctor’s office don’t have to be the only options. Taken away from the medical establishment, I wonder what my metaphors can tell me.

Can my pain do something else, take me somewhere else? What would it mean for it to be a rainforest rather than a gunshot? For it to be like roots pushing through mud, rather than like burning in a house fire? Or for it to be some attempt to comfort, rather than to punish?

There is still a desire to express pain perfectly. It is easy to think that if there were some better way to explain my pain, that would mean more empathy, more treatment, and more care.

But I do not need objectivity. I want my pain to enter a poetry competition. To sit with me and imagine more realities, more worlds, more metaphors.


Notes
1 Scarry, Elaine. 1985. The body in pain: the making and unmaking of the world. Oxford: Oxford University Press.

2 Frank, Arthur. 2011. “Metaphors of Pain.” Literature and Medicine. Johns Hopkins University Press Volume 29, Number 1, Spring 2011.

3  Heshusius, Lous. 2009. Inside Chronic Pain: An Intimate and Critical Account. New York: Cornell University Press.

4  Kirmayer, Laurence J. 1992. “The Body’s Insistence on Meaning: Metaphor as Presentation and Representation in Illness Experience.” Medical Anthropology Quarterly

5  Siemann, Izze. 2017. “How McGill invented pain: 1970s pain scale still used today.” The McGill Tribune. [online]

6  International Association for the Study of Pain [IASP]. 2020. IASP Announces Revised Definition of Pain. [online]

7  NHS. 2019. Symptoms: Complex Regional Pain Syndrome. [online]

8  Semino, Elena. 2010. “Descriptions of pain, metaphor and embodied simulation.” Lancaster University.

9  Csordas, Thomas J. 1994. “Introduction: The Body as Representation and Being-in-the-World.” Embodiment and Experience: The Existential Ground of Culture and Self. Cambridge University Press.

10  Sontag, Susan. 1978. Illness as Metaphor. New York: Farrar, Straus and Giroux.

11  Vaid-Menon, Alok. 2022. “Interview with Ocean Vuong.” Issue No. 32. The White Review.