Years of chronic illness left Eve McDonald frustrated by the lack of language available to describe her pain. Rather than submitting to suffering in silence, she chose to piece together a new language, embracing the “ineffability of illness” through creative writing and online support groups.
The Appointment
All morning, I kept checking that it was still there. Leaving the house, in the car, in the carpark, in the reception area, walking into the appointment. When the doctor asked me to start talking about my symptoms, I reached into my pocket for the crumpled piece of paper, glancing down at the years of pain scrawled into a few succinct bullet points. Support groups for people with chronic illness say this is wise, as it allows you to keep track of everything you want to address in this appointment for which you have likely waited months, or even years. The doctor, however, immediately told me to put the paper away. “If you’re really in pain every day,” she said, “you should be able to tell me about it without looking at that.”
I hardly spoke for the rest of the appointment.
Angry Faces
This appointment took place in 2021. Looking back, the situation infuriates me. I cannot comprehend how, at nineteen years old, I was expected to eloquently articulate an experience which often lies beyond the powers of language. Havi Carel, a philosopher who studies illness through a phenomenological lens and sheds light on subjective, first-person experiences, describes these moments when “illness feels impossible to describe and talk about” as the “ineffability of illness”. An ineffable experience either resists description entirely or can only be described in ways that are inadequate and incomplete. (Carel, 2004). This doctor, however, chose to view my inability to express pain without a prompt as evidence that it didn’t exist.
Elaine Scarry has written extensively on physical suffering and argues that “Physical pain does not simply resist language but actively destroys it, bringing about an immediate reversion to a state anterior to language, to the sounds and cries a human being makes before language is learned.” (Scarry, 1987). Upon reading Scarry’s words, I immediately felt comforted. An act I had always perceived as a sign of emotional fragility was transformed into a natural response to pain.
Of course, during those moments when language abandoned me, there were many other sensations than just physical pain at play. Exhaustion. I simply didn’t have the energy to face the emotional ordeal of articulating how pain and fatigue had stolen my adolescence from me. Defeat. I had little faith in the outcome of appointments because I knew that even if I could find the words, I would be ignored and dismissed anyway. Guilt. I constantly felt as if I was “wasting” precious appointment time because I couldn’t speak articulately. As soon as I gingerly sat down on the blue, plastic chair opposite the doctor, these buried feelings began to resurface, creeping up my neck and forming a lump in my throat that I always gave into.
After this particular appointment, I wanted to discharge myself from all the waiting lists, crying to my mam, through tears and snot, “I’m so tired! They’re not listening and trying to explain just makes me even more tired and being tired makes the pain worse—there’s just no point in going!”
With what little energy I had left, I posted in a Facebook support group. This was something I’d avoided for a long time, as the insinuation that my pain could be cured with forced digital friendship added insult to the injury of my situation. As a defensive teenager, I registered any advice about friendships and talking as a suggestion that I wasn’t physically unwell but simply sad and lonely.
Fifty-six angry faces, twenty-six shocked ones, eleven sad, six thumbs up and four caring. I watched the numbers increase each time I opened my phone, showing me that these strangers cared. It was as if they were feeling emotions on my behalf. They held all the shock and anger at my situation that I didn’t have the space to carry in my exhausted body. Although the reactions didn’t include words, I felt more understood by these emojis than I ever did by the words of any doctor. For so long, I was convinced that I was trying to articulate a unique and singular experience. The online group, Endometriosis Support UK, broke through this sense of isolation and granted me a break from grappling with the inherent inadequacy of language.
With my phone in hand and eyes half-shut, I pulled together the most clumsy, inarticulate and grammatically incorrect sentences, reveling in the opportunity to be careless with my words. I made a mockery of the English language with a string of poorly chosen adjectives, invented nouns and overly emphatic punctuation. I wrote posts in what I had always assumed to be an indecipherable code that only I understood.
When I first became ill, I began constructing my own private language of pain and remedy. For example, sometimes I felt “sleepy tired” and other times I felt “poorly tired”. As I began to write, to put this constructed language out into the world, much to my surprise, people were astounded by the accuracy with which I had also described their pain. We bonded over the “burny thighs”, the “pull-y feeling” and the “blunt stabbing.” This group gave me the gift of a common language.
Living with a Beetle in a Box
Ludwig Wittgenstein wrote about how humans discuss private sensations, such as pain. He argued “the essential thing about private experience” is that “nobody knows whether other people also have this or something else” (Wittgenstein, 1967). However, we are still able to talk about private sensations, as he demonstrated through the analogy of a beetle in a box.
Imagine that a group of people each have a box which they claim contains a beetle. If no one can look at anyone else’s box, there’s no way to verify that one person’s “beetle” is the same object as another’s “beetle”. But the object of the beetle is “irrelevant”. As long as the word “beetle” has a shared and mutually understood “use in these people’s language”, then they can still effectively discuss beetles (Wittgenstein, 1967).
When writing on Facebook, I could not verify that what I described as “burny thighs”, was the exact same sensation that someone else felt when they commented “me too!” But it didn’t matter, because I was finally talking to people to whom the term “burny thighs” actually meant something. Both of us felt a respective sensation that we agreed to call “burny thighs”, which allowed us to talk meaningfully about this concept and how it impacted our day. Our common use of the words was more important than the private sensations to which they referred.
For a brief moment, I could breathe again. I had found a space in which my words were not being scrutinised under the interrogating light of a future report, to be used to justify my time off school. My sentences were not being analysed by a GP to determine which hospital department they should refer me to next. I could write and speak without feeling like I was about to fall into a trap, created by my own lexicon, that would eventually be used against me.
A Second Chance at Speaking
Growing up, I believed that my inability to accurately describe my pain, sensations and symptoms was due to an innate ineloquence. I surrendered to the fact that I would never be able to speak in a language that enabled me to communicate my lived experience and simply stopped talking all together. Even into my late teens, there was a time in which I would not go anywhere without my mam. I would hide behind her and make her speak for me in even the most basic verbal exchanges, like asking a waitress for a packet of salt. I see now that this shyness and hatred of speaking is not what caused medical professionals to dismiss me but was itself an effect of constantly being dismissed and ignored by them. I had been completely worn down.
Interactions with the other members of Endometriosis Support UK gave me confidence. I began to use medical terms picked up from the comments left on my posts. Back then, I still held onto the hope that articulating exactly what I felt in my body would lead to a diagnosis that would perfectly match my description. I am no longer convinced this is possible. However, at the time, I did not think the language to describe my pain did not exist; I believed I simply had not found it yet. I was therefore very smug with the new words I had acquired.
The doctors soon burst my bubble with backhanded compliments like, “well, you’ve clearly done your research”. I soon resorted to infantilising descriptions of my pain as I mumbled, “it’s a bit stabby just here.” I could not understand why I was not allowed to use their language to talk about my body. Why did I have to purposefully obfuscate my words? Appointments became a linguistic game, as I tried to calculate which words I could use to steer these professionals towards understanding what I really wanted to say. I tried to find a balance between sounding like a clueless child and a hypochondriacal Wikipedia warrior. Describing my symptoms felt like trying to hit a keyword count until they suggested a test I wanted to have (but knew I could not suggest myself because they would say no).
Accepting Doubt and Finding Grace
In some ways, medical language has lost all meaning to me. So many diagnoses have been mentioned in doctors’ offices. Myalgic Encephalomyelitis. Chronic Fatigue Syndrome. Pediatric Acute-onset Neuropsychiatric Disorders Associated with Streptococcus. Endometriosis. Irritable Bowel Syndrome. Raynaud’s. Narcolepsy. Cataplexy. Delayed Sleep Phase Syndrome. I have been diagnosed, mis-diagnosed and re-diagnosed countless times. Some were suspected but never confirmed.
The way in which these words were given and then taken away so easily has rendered them completely meaningless. I used to be desperate for a concrete diagnosis for my own peace of mind. Yet, an unexpected blessing of this struggle with language is the way in which a diagnosis becomes less valuable (other than for reasons of practicality, like accessing support and reasonable adjustments). A medical term could never encapsulate the years of pain, fatigue, dismissal, and mistreatment. Perhaps this is why I have turned to writing.
I’ve begun to write creative non-fiction essays about my experiences with chronic illness. Continually, I must remind myself that the goal is not to convince anyone of my pain. Even if I could write the “perfect” essay, convincing everyone would be a futile pursuit; to have pain is to “have certainty” but to hear about pain is “to have doubt” (Scarry, 1987).
I do not know exactly why I am writing yet. Some days I feel motivated by self-love, care for others, and a desire for change. Other days rage, indignation and revenge make me pick up the pen. Sometimes, I have no desire to write at all. However, I consistently find, no matter my source of motivation, that it is much easier to write about the issues that exist alongside the pain than about the pain itself.
When I write about identity, maintaining friendships and relationships, and experiencing medical misogyny, the words come easily. I can write convincingly about a love I no longer feel or a fear I have since let go of. Yet the pain and fatigue I carry with me, and know intimately, feels impossible to capture. I try to write about pain and it feels flat, boring and lackluster. I don’t yet have a solution for this; I am not convinced I ever will. Rather, I have come to accept that refusing to force descriptions of pain is the most authentic way to write (or not write) about it.
About the author
Eve McDonald is an amateur writer and photographer from Teesside whose work centres themes of illness and gender. She recently graduated from the University of St Andrews with a degree in Arabic and Spanish.
References
Carel, Havi. 2004. “Breaking the silence on illness.” IAI News, February 5. https://iai.tv/articles/breaking-the-silence-on-illness-havi-carel-auid-2732
Scarry, Elaine. [1985] 1987. The Body in Pain: The Making and Unmaking of the World. Oxford University Press.
Wittgenstein, Ludwig. [1953] 1967. Philosophical Investigations. 3rd ed. Translated by G. E. M. Anscombe. Basil Blackwell.
