I’m Kate. I have endometriosis. Due to the nature of my endo I am in pain daily. This pain has been going on for over four years now. I like to think that there is more to my identity than my chronic pain, but for the present moment the rest seems kind of irrelevant. I enjoy writing about pain, because it is interesting, but it’s also damn frustrating. There is so much to say that it kind of tangles together, and it often takes a lot for me to tease out some kind of coherency. But I wanted to write something. I started this in March – Endometriosis Awareness Month – so I guess it’s partly for awareness, but I think mainly it’s because I want someone to read, to listen, to understand, or at least try to.

Part of the reason that I find it hard to write about my pain is the whole where to begin question. Do I attempt to start from the beginning, or do I tell my story from where I am now? Do I try to explain the physical or the mental realms of it all? Do I write it in poetry or prose? And how do I tie it all together – how do I structure it?

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A friend recently suggested that I listen to this podcast, Dan Carlin’s Hardcore History. The specific episode I was recommended, “Show 61 – (Blitz) Painfotainment”, begins with Dan Carlin stating, in his weirdly compelling and slightly ominous voice: “I am very interested… in pain.” Same here, Dan. Same. Here. Carlin and I are interested in pain for slightly different reasons, however. He is interested in pain in a wider historical context, with the above statement coming before a discussion of public execution. My own fascination with pain is normally in the context of the chronic variety. It is still a discussion about pain though, and within the first five minutes of the podcast I had a page of notes comparing, contrasting and expanding on ideas that were all prompted by various statements of Carlin’s. This podcast kinda gave me a way to write about my pain. Here are a few of my notes.

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Pain and art

At one point in the podcast, Carlin says about pain: “it’s a source of art, and always has been”. Amen. I have produced plenty of ‘artworks’, or at least I have started a heap of yet-to-be-completed projects, using pain as my subject/inspiration. It should be trite at this point but, honestly, the subject continues to fascinate. I once wrote an essay for an English paper on the relationship between chronic pain, narrative and the self. I always hoped that I would extend what I had written, make it a little more personal, add in all the bits I had cut out – the diagrams, the different tangents. I didn’t, but it remains somewhere on my computer, a personal data mess of various files. Perhaps one day it will be glued together with frustration. I have notes on my phone, Word documents, random scraps of paper, drawings, photos that I’ve taken, all relevant to the exploration of pain (specifically mine). Pain is definitely a source of art, but I think when it comes to chronic pain it could be argued that it does not just produce art because it can, but because it needs to.

Art can function as an act of distraction and release – a way of undermining the overwhelming. Painting and poetry are not what I typically use as methods of sedation when I am in the midst of a multi-dimensional migraine, but art can serve as a channel for the strange emotions that are constantly rebalancing themselves around the presence of pain. It’s in the same vein as the catharsis that comes from the physicality of scribbling on a piece of paper until it rips. Chronic pain needs art for this kind of catharsis – almost a siphoning of pain.

Art also acts as a form of communication For most chronic conditions the cause of pain is invisible, perhaps both invisible and unknown, which means that there is a constant need to communicate the pain to doctors, friends and family. Pain is subjective, though. Pain does not adhere to language, temporality or narrative structure. Our narratives that surround pain are all about fighting through something. Butchronic pain is a state – it has no end, no other side. Often beginnings are lost too – I personally cannot remember what it is like to not be in pain. Temporality loses its meaning. While language falls short, you end up resorting to descriptions of feelings that few have experienced – like being stabbed, or as if part of you is on fire. But those are never quite right.

They say a picture speaks a thousand words, although perhaps it just speaks when words can’t. Pain translates easier into the visual and the poetic, because it is not something that can be directly spoken. It is something that must be conveyed: an emotion; a vibe; an atmosphere; some immersive feeling. As language conventions and sense become less important and surrealism steps in, trying to explain the inexplicable becomes a slightly easier task. Anything can be art, there are entire academic discourses trying to figure out what defines art, and this lack of a definition allows for more movement in expression, more avenues, tools and possibilities to help try and communicate the subjective and indescribable. Art alleviates the pressure to concisely report on what is; the uncertainty of pain fits with the abstract nature of creativity. People can look at art to gain an understanding or a new perspective but – like pain – art cannot be translated, it just is.

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Pain is isolating

Carlin also states that “we can all understand pain” and suggests that pain “connects us to each other”, illustrating this with a quote from James Baldwin: “It was books that taught me that the things that tormented me most were the very things that connected me with all the people who were alive, who had ever been alive.” Both Carlin and Baldwin are right. But they are also so wrong. Pain can definitely establish connections, through empathy or shared experiences. Some pain, though, isolates.

Invisible conditions require you to both cope with the physical pain, and convince others that you aren’t making it all up. Once you have convinced those around you that you are not a liar, it is also important to convince yourself, because having professional people doubt you often shakes your resolve a little and, who knows, perhaps everyone else is in this much pain as well and you are just incredibly pathetic. Oh, and by the time you have convinced yourself that you aren’t losing your mind, the people around you have probably forgotten. So you might have to explain it again when they ask why you’re tired despite getting eight hours sleep and not really doing anything with your day.

Constant pain acts as a constant reminder of constant pain. The people around me don’t have that. My best mate once told me that I need to get used to telling people how I feel more, because I am really good at brushing people off and pretending I am fine. She said that sometimes even she finds it hard to read me and she’s known me for over 15 years. But I don’t like talking about my pain much because it’s kind of a downer. It is also hard to articulate. And attempted articulation often doesn’t produce the results I want. Not that I really know what I want.I want people to acknowledge that this sucks, but I don’t want pity. I want people to understand that it can be hard, but I also want people to understand that I am fine. I want people to sometimes check in and ask if I am okay, but I don’t want people to think I am incapable because I have dealt, and I can deal, with this on my own. Pain is liminal and paradoxical... and isolating.

One day my friend Pearl and I were talking about our conditions (Pearl has scoliosis) and about how our experiences seem to have made us slightly unsympathetic to others’ pain. It’s this weird gut reaction I have that when people complain (too much) about being hurt, I want to tell them, “Get over it, at least your pain has an expiry.” It is definitely an unhealthy response, rooted in bitterness and jealousy, but one that I can’t shake. People can break their legs and get flowers and cards and others offering to give up their seats on the bus, while we just have to keep going with no acknowledgement. Not that I want or deserve acknowledging, but it’s the feeling of isolation, it’s the feeling – as I said to Pearl that day – that other people get to choose when to care about my pain, but I have to care about it all the time. Pearl, stunned by the accuracy, replied, “Bitch, that hurt.”

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Pain and the self

Lastly, Dan Carlin said that “all of a sudden those sensors that keep you safe are the very weapons used to hurt you”.Here he is talking about the way pain, as a useful built-in warning system, can be misused when we inflict pain on each other wilfully. In my case, however, it is the warning system itself that is broken. My body is inflicting this pain. I am hurting myself. A kind of unintentional self-harm which does weird things to my concept of identity. There is the obvious, in that what we consider our identity is shaped by our experiences – and this condition has definitely shaped parts of my personality. It has made me better at working through pain, it has made me realise how lucky I am to have my parents’ support, and it has made me rather wary of doctors.

When your sensors ‘turn against you’ there is also a fracturing of the self. My body set pain as its default mode, and because of this I always rejected my body as unnatural, not right. I am not saying now that what my body is doing is necessarily ‘good’, but I have had to shift my mindset a few times so that I’m not discounting an entire part of myself. Pain is often considered as something impermanent. You fracture your foot and it hurts, but after six weeks in a moon boot it’s back to normal. We treat pain as something to be removed, and overcome, but any pain that is chronic in nature problematises this. When your pain is ongoing your narrative has to become less about fighting the pain, and more about making peace with it.

There is the rhetoric that our bodies are temples, that with enough reverence our bodies will be blessed as a result of the respect we show them. I have a complex relationship with this idea. Self care is obviously important, especially when we are often encouraged to put consistent productivity before health. But in the same breath, a ‘temple’ implies that it’s some kind of blessed holy place, and sometimes my body doesn’t feel that way. I have had to readjust my perception of what a ‘healthy’ body feels like. Sometimes a ‘healthy’ body feels like shit, and sometimes that is out of your control – and that’s okay.

Pain also forces you to acknowledge the confines of your body. There is something perversely grounding about it, as it demands a focus on the physical. There is a certain level of pain where your ‘vision’ narrows. Where the only thing in your scope of comprehension is pain. Mostly my pain is in the periphery – present, but at a level where I can give my attention to other things. But in times of ‘narrow vision’, all there is is pain. This kind of pain sucks, but it also makes everything so simple for a moment. In those moments there is no space in my mind for other stuff, I exist purely as a vessel for pain, or perhaps a vessel in pain, and my sole focus is to steer myself through. The disconnect sometimes felt between body and mind is nonexistent when all of me is focused on one goal.

There’s a song by Ezra Furman called “My Teeth Hurt”, with this one lyric, “The ache inside reminds my mind my body’s really there.” I feel that. There is something empowering about the physicality of bodies that either my pain itself, or my exploration of it, has helped me appreciate. I love noting people’s physicality: their listening faces, the way they talk with their hands, roll their eyes, the way they take up space. Or even my own physicality – like when I dance and adrenaline numbs the pain, and the music feeds mind, body and soul all at once: a healthier kind of grounding. It doesn’t take pain to appreciate physicality for everyone, but it kinda did for me.

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I remember this one time in high school when our English teacher asked us to picture ourselves. He then said to picture one other person. “Now, imagine that you have switched brains with that other person,” he said. “Are you the person with your original body, but a different brain, or the imaginary person, with your brain?” Most people chose the imaginary person with their brain. I did too. Years later, though, I am not so sure. I think I need my body more than I thought. And I feel more whole knowing that.

'Who We Are Now' is a series of first-person essays on aspects of life in Aotearoa in the present moment, supported by a Copyright Licensing New Zealand Contestable Fund Grant 2020. Read more in the series here.