Interactions with Persistent Pain:
Knowing and Enacting the Painful Body
Maja de Langen
Student no: 10862552
Supervisor: Kristine Krause
Second Reader: Jeannette Pols
MSc Medical Anthropology and Sociology
Graduate School of Social Sciences
Table of Contents
Acknowledgements... 3
Introduction... 4
1. Fieldwork in Pain ... 10
Coming to terms with Auto-‐ethnography... 13
The Wider Pain World ... 15
A Network of Words, Pain and Research... 18
2. Pain in Language ... 19
Language Learning ... 22
Tools of Translation ... 25
Questionnaires ...26
The Work of Metaphors ...27
Language and Care ... 28
3. Messy Multiplicity... 30
Enactment through Practice... 32
Pain, Pathology and Hierarchies of Knowledge... 33
Imaging technologies...34
The physical exam: re-creating pain...35
Ordering Pain... 37
Diagnoses ...38
Scales...41
Multiplicity and Care ... 42
4. Learning Pain ... 44
‘Active Pain Management’ in Self-‐Care ... 45
“Just Common Sense” ...47
Valuing ...48
“To some extent” ... 49
Learning and Care... 52
Conclusion: Anthropology and Care... 54
Acknowledgements
Knowing how precious time is when you have pain and fatigue, I want to first thank the pain experiencers who gave their time to talk to me. I am also grateful to the many experts who care for those in pain everyday, and who agreed to interviews or invited me to observe their interactions with pain, particularly those at the multi-‐disciplinary pain clinic and Yoga for Pain. While they did not have so much choice, I want to thank my own healthcare team for their rich and often willing participation in my research. I’m grateful to, Stephanie Stelko, Annelieke Driessen, Renata Christen and Vanessa Maloney for their helpful comments and to Stijn Donglemans for checking my medical language and thinking through with me as I tried to know my own pain. Thank you to all of the engaging teachers of the MAS, particularly Rene Gerrits and Patrick Brown. My biggest thanks go to my supervisor, Kristine Krause, who is as caring as she is sharp, a
combination without which I could never have embarked on this project. She gave me a way to interact with my pain, by challenging me to find words for it, words that she listened to both sensitively and analytically. My enactment and experience of pain would have been very different without her. Finally, I want to thank everybody who has asked after Footsy and the people who didn’t need to understand pain to be able to care
Introduction
My research began with a supposed impossibility, the impossibility of putting pain into language that is attributed throughout the literature to Scarry (1985). It began with a task; try. So I did. I tried to describe the feelings of pain, to put them into words, not knowing where it would go in this period when my brain was clouded by the fog my informants would later describe to me. I wrote every day, trying to understand patterns, trying to know my pain. I wrote about uncertainty and fear, about every new theory, each possible explanation. I wrote about the strange feeling that my body was sliding away in different directions, while I dipped into different treatments and concocted strange pain experiments. I had never wanted to write about pain, or about something so boring as myself. I didn’t want to be stuck inside my own head. It took ten months of pain to believe in its persistence, to accept that I would be in my own head, in my own body; that pain would anchor me there. I began writing about pain when it utterly consumed me. How could I have written about anything else? My collection pain of words grew into the thousands, forming a pain that I could interact with, until, one day, sitting on the couch, I had my first hour without burning. The whole world changed. I could start to think outside of myself and I began to wonder what I could add to the pain world.
Many people, few ideas: we all think more or less the same, and we exchange, borrow, and steal thoughts from one another. However, when someone steps on my foot, only I feel the pain. -Milan Kundera, The Unbearable Lightness of Being
I could add to the rich anthropological work chronicling the lived experience of pain. The suffering, the loss and the isolation that characterises persistent pain. Yet, as important as these accounts are, what I find missing from the literature is the way in which the pain
experiencer, rather than being passive, is actively interacting with their pain. Pain acts on your body and your life in ways that change it profoundly but, inevitably, you also act on your pain, trying to shape it, change it and know it. Throughout my research, I asked how pain is known and communicated and how knowledge and interaction are intertwined. Pain is often presented as the ultimate subjective and unknowable experience (see for example, Fagerhaugh & Strauss, 1977, or Kleinman et al 1992), accounting for the misunderstanding and mistreatment common to persistent pain stories. Yet I want to depart from the idea of an unknowable reality of pain, isolated within an individual body. I will show how formal and self-‐care abounds with practices that make pain known, to consider pain not as a singular, static reality but as multiple realities enacted through practice (Mol 2002) and situated in a network of relations. To explore practices
of knowing and of interacting with persistent pain (otherwise referred to as chronic1) I did
observation in several pain care2 contexts, interviewed pain experiencers and healthcare
professionals, analysed self-‐care and scientific literature and drew on my own unfolding experience.
Persistent pain is pain lasting more than three months, or “persisting beyond the expected healing time of injury or disease” (The Royal College of Anesthetists, 2011). By definition then, persistent pain breaches the behaviour of the ‘standard’ body and ‘normal’ healing patterns, where pain shifts from a symptom signifying pathology to be considered a problem in itself; a problem that by resisting objectification (Kleinman et al 1992) challenges the ‘objectivity’ of contemporary medicine. But wait, we can go back a step. What is this pain we are talking about? The International Pain Society tells us that pain is “an unpleasant sensory and emotional
experience associated with actual or potential tissue damage, or described in terms of such damage” (International Society for the Study of Pain, 2015). It is a definition that already
suggests pain as a boundary-‐confounding object, which brings into question distinctions we use to think about the body, as well as the boundaries that organise medicine. Pain care itself abounds with disputed terms, classifications and definitions (Jackson, 1992, p. 141), bringing to
1 Chronic pain is increasingly replaced by the term persistent pain and I will contribute to this trend
because chronicity implies that pain cannot be overcome, while it is more constructive to consider why persistent pain is so often mistreated or left untreated.
2 Pain care itself is a term I have chosen to bridge differences in the terminology used by health care
professionals and can mean pain management, any therapy or guidance related to pain or associated experiences such as fatigue, or treatment of a person, pain disorder, disease or symptom.
light the multiplicity in how pain can be known, yet eludes precision. Nonetheless, before going any further I would like to take a detour to present an explanation of pain, an idea of what pain is about and of the words and categories used to organise it. I try to give space to the multiple realities of pain that I encountered during fieldwork but it is just one way to explain pain. I am sure you are coming with your own pain experience. Keep it in mind, even pause to describe how it felt and if you prefer, replace my explanation with one that works for you. My explanation is dominated by a physiological explanation, stemming from Melzack and Wall’s 1965 gate-‐
control theory3, aptly described as a “paradigm shift” in how pain is understood (Jackson 2005)
and forming the foundation for contemporary, ‘scientific’ understandings of pain.
***
Pain is always, without exception, in the brain; it is a process involving the virtual body, areas mapped in the brain that ideally, but not necessarily, correspond to the physical body, called the hommunculan man. Pain is often, a process involving the physical body. To make this clear, look for a moment at your right hand. Think about the bones, muscles, nerves, tendons and other tissues that make it up. Think inside it. Now imagine somebody taking a heavy hammer, smashing it down on your hand again and again. In the ‘standard’ body, the sensors on your nerve cells that respond to touch will be activated, opening for negative potassium ions flood in. Once they surpass a certain threshold, which is different for different people, different at different times - controlled by hormones and neurons - an electrical signal will fire; a process called nociception. The electrical signal travels to the end of the neuron, releasing neurotransmitting chemicals into the neuron gap (synapse). If there are sufficient neurotransmitter chemicals in the synapse, such as adrenaline and glutamate, and not too many inhibitory chemicals, like serotonin and oxytocin, the signal will jump across the synapse to the next neuron, continuing until the brain. Ideally, the neurons in the part of your brain that represent your battered right hand will light up, and your brain will process these signals, along with signals from other sensors (the sight of the descending hammer, the sound of crunching bones, the continued danger of the hammer wielder) to decide, preferably, to interpret these signals, often called danger signals, as pain.
3
The Gate-control theory replaced Descartes model of pain, where a signal was registered in the body and
travelled directly to the brain. The gate-control theory instead suggests that a signal registered by neurons in the body have to travel through several stages, or ‘gates’ throughout the nervous system. The gates can be opened or closed by other stimuli or suppressors. It accounts for phenomenon such as soldiers who do not feel wounds until they have reached safety, where certain gates are ‘closed’ to enable them to escape from an immediately
Here, the process is quite clearly in both the virtual and physical body but if after the hammer incident your hand is amputated, you may be one of 95% of amputees who continue to feel pain in their hand. Yet the hand no longer exists, the neurons are no longer firing, that signal isn’t travelling between the hand and the brain but the hand of the virtual body continues to hurt. The ‘hand-area’ of the brain would light up under imaging and you are aware of pains, itches, or other sensations in a limb whose existence is no longer physical. These are two examples of pain. The latter is an example of neuropathic pain and in lay terms may be thought of as ‘unreal’, whereas the immediate feel of the hammer, is an example of nociceptive pain, more likely to be thought of as ‘real’. Yet, even this ‘real’ pain involves much more than the damaged hand; it also involves the virtual body and the network of nerves and hormones. The dichotomy of real/unreal pain already begins to break down in these extreme examples but most pain examples are even less clear-cut. Often the pain experience is a mixture of nociceptive pain, (nociception being the action of the nerves firing), and neuropathic pain, the pain attributed more to the brain and the nervous system than to tissue damage. Persistent pain, even when there is tissue damage, invariably has a neuropathic component and getting to know pain through these categories, trying somehow to distinguish these categories, is one of the ways through which pain can be known.
Remaining with the same example, we can look at other possible interactions with the painful hand to consider how pain can be known between the extremes of the immediate attack of the hammer and the hypothetical amputation. The hand is immobilised and you hope for the best but six months later, the pain is somehow worse than even the initial hit of the hammer. What knowledge constellations will you, the body, the brain, the mind, the hand, consults? Who and what will you involve to interact with your pain? You’ll likely first visit an orthopedic surgeon, who will look for and probably find a biomechanical explanation, highly localised to the physical hand. A biomechanical solution may be offered; surgery to reshape the hand. Yet by this time there is more to your pain than nociception. There have been significant traumatic changes to your physical body but your brain, your central nervous system, your virtual body and your virtual hand; they are changing too. The continued process of nociception is telling your brain that you are under threat, activating your sympathetic nervous system, primed to respond to danger. Your hand and even other parts of your body become more sensitive. Potassium gates open, inflammatory chemicals are produced, signal thresholds lower and more neurotransmitting chemicals are produced. So that you protect your hand, nociception now occurs with less stimulus, or with stimulus that would not previously have been interpreted as pain, like normal temperatures, the light touch of clothing and even noise. The neuron pathways of pain become engrained, patterns develop and the more pain signals firing, the easier it is for the pattern to repeat, to escalate and for pain to continue, even if the physical stimulus is removed. The hommmunculan man may change shape, the hand that is in continued danger, or so it seems, might become bigger, the edges blurring and overlapping other parts of the body, so that you begin to feel pain up your arm,
even to your face, which is right next to the hand in the virtual body. The virtual body changes, the activity of the nervous system changes and the physical body changes.
If you are lucky, several months after correcting the nociceptive element of your pain, the other, neuropathic elements will follow suit. You may be able to cook dinner again, wear a watch, tie your shoes. Or, you may still have pain, the pain may have changed and you may find yourself seeking other explanations of pain, other ways to interact with it. You might uncover the pain literature that so often makes distinct the mind, the brain and the body as each having a role in the pain experience. You may encounter health care professionals whose knowledge of pain is dominated by the mind’s role; giving you practices like meditation or yoga to quiet the mind and calm the nervous system, ultimately altering chemical balances. You may favour a neuroplastic knowledge of pain and use neurological exercises, from ‘evidence-based’ computer programs to hypnosis. You will almost certainly encounter the more traditional knowledge of pain as a chemical process and be offered different medications, analgesics, anesthetics and “talking drugs”. You will likely continue to use a biomechanical knowledge of pain, accessing different types of physical therapies, some of which bridge neurological and biomechanical knowledge. Professional knowledges of pain are changing, expanding and diverging. The more you look, the more options you find but none of them claim to be a complete picture or treatment for your particular “pain puzzle”.
And how do you know your pain? It is only you who is experiencing it. Perhaps you know it as a barrier to everything you did in your life, the activities through which you identified, that gave you purpose, meaning, pleasure. Perhaps you know it as dependence. Or as a challenge, a journey that will make you stronger, realign your priorities and change you for the better. Or as fatigue, nausea, sleeplessness, or anxiety, all of which can be objectively linked to the chemical changes in the body in pain but which can also be felt, expressed and believed. Perhaps pain is the crumbling of relationships, utter loneliness, judgment and abandonment. Perhaps you know it as the most real thing you have ever experienced. Or it seems unreal, eluding your logic and reason. Perhaps you know how to describe it, in emotive terms, or chemically, or biomechanically, or in relation to the central nervous system, or to neuroplasticity. You may have jumbled together several knowledges into something that fits you, or made up something unique that allows you to interact with your pain. You may know it as achey, sore, burning, stabbing, shooting, throbbing, tender. Or just as a fear, a feeling, overwhelming and consuming all parts of your body, your life. Or it is simply there, constantly in the background. Perhaps it is an experience that seems too elemental, too private for you to put into words. Perhaps it is just a feeling.
Pain has been described as an “ontological assault” (Good et al. 1992, p. 202) and this ontological uncertainty of pain, its multiplicity and elusiveness, invites a theoretical approach that embraces fluid realities; material semiotics and actor-‐network theory (ANT). While many of my informants reminded me that pain is an experience, not a ‘thing’, they went on to describe or demonstrate care practices that enact pain as objects of care, objects that could be interacted with. Material semiotics tells us that entities achieve their form as a consequence of the relations in which they are located (Law 2009) and while you may never feel as alone as when you are alone with your pain, pain care draws in objects, techniques and other people; a network of interaction within which your pain takes form. By interacting with pain, it is made known and enacted as
something to interact with. Pain moves from a supposedly passive experience, to an object of active care, performed in, by, and through a network of relations (Law1999). I aim to unpack the networks within which pain is produced, the multiple realities of pain that are enacted through care practices and how they enable particular ways of interacting with pain. Chapter one, Fieldwork in Pain, introduces my informants, tensions within auto-‐ethnography and the way in which my thesis played a part in producing my pain reality and interactions. Chapter two, Pain in Language, disputes pain’s resistance to language by focusing on how language is part of a network that enacts layers of pain. Chapter three, Messy Multiplicity, turns to interactions in formal care and the tools and conditions through which pain is known and enacted. Finally, chapter four, Learning Pain, considers how the pain experiencer pulls together diverse knowledges and develops practical knowledge to interact with pain and both internal and external environments.
1. Fieldwork in Pain
Can you imagine how it feels when your bed, that should be comforting and safe, is suddenly a source of agony? I think back to past pains - a tendon snapping, bones crushed to pieces, a metal spike piercing through a hand, a third degree burn - none of them come close to comparing to this intense, horrifying burn. I find myself on the bathroom floor, in the middle of the night, in the dark, alone with my pain. This is the image that comes to mind when I think of how it is to live with pain. The image that so many of my informants described to me, of hours and days, sitting in the dark, depriving bodies of any stimulus because light, sound, anything, can be overwhelming. Sitting in the dark, afraid, alone, not knowing what to do. There is no space for thought, there is only feeling. Every single cell in my foot is screaming. My body is hot, almost feverish, clammy with sweat, my breathing uneven. My entire being is in my foot. Nothing exists beyond it. Underneath the glove of burn, pain shoots sharply from my metatarsals and pools in a dull ache around my ankle. I don’t know how long I lie there on the cool tiles before my body begins to recalibrate to this level of pain, before I am able to breathe again, to reach a strange level of almost calm while my foot is crushed between scalding irons. I think of taking opiates but they barely help and besides, I want to be lucid tomorrow to work on my research proposal. What was it I was going to say? That experiencing pain is active? ‘Anthropologists come up with some bullshit’, says pain-me to anthropologist-me. ‘Look at you. You just had an emotional battle with a bed sheet. And you lost. Is there anything more pathetic? You have never felt so alone, lying here on the bathroom floor in the middle of the night, on the wrong side of the world, not knowing how your foot can be so swollen, red, radiating heat. This morning you could walk but now your skin is waxy, stretched over a hard misshapen blob. You have no idea how to stop the pain, nor the energy to do anything. Even the illusion of control is gone. Active!?’ We lie there for a few minutes, or hours, my pain and I, until
anthropologist-me makes a rebuttal; ‘but isn’t there anything active in this, in lying on the
bathroom floor? Did I come here because I now link pain to throwing up and want to avoid the mad hop to the bathroom? Or because it is the coolest spot on a scorching hot Australian summer night?’ The cold from the tiles emanates towards my burning foot, the hot and cold currents hitting into each other, swirling around me, soothing, giving me space to ask why, why this pain, why now? Is the problem the warmth of this flannelette sheet, the first clean sheet I grabbed from the cupboard? Or is it just having a new texture? What am I saying, I know the problem is my foot, or rather, my nerve, my brain, my central nervous system. Aha! Here is a way I am actively knowing this pain, by knowing it as CRPS, a pain disorder, without which I would surely have gone to hospital in a panic.
Instead I remember blogs of people with CRPS who cannot change bed sheets, and gingerly place my burning foot on top of the other, in my effort to teach it to be okay with the texture of its twin’s skin, hoping to give it something that doesn’t hurt no matter where we go. This is one of the first ways I actively interact with my pain but my pain self, who isn’t my nicest self, tells my
anthropology self that it’s clutching at straws. I can’t help but agree a little, though being here on the bathroom floor is not just the result of a lost battle with a bed sheet, the result of having no real idea what to do. It is also the result of how I am knowing and interacting with my pain. Instead of bringing it to hospital, I am knowing it as CRPS, something they can’t help me with. Google tells me there is no cure for CRPS and my healthcare team, who give me exercises and medications, tell me that the treatment is unclear. It’s up to me to figure it out. All the me’s are telling me how terrifying that is and pain-me is in panic. I don’t know how I will ever feel well. My emotions burn through my foot and the pain makes the emotional experience wilder, going round and round. I just don’t know what to do. All I can do is lie, exhausted, on the bathroom floor.
Writing about my own experience I feel quite self-‐conscious, not just because I’m not always proud of how I handled my pain but also because I feel like readers will doubt my pain, compare it and judge it. Perhaps this is paranoia but if so, it is a paranoia well documented in pain literature (e.g. Jackson 2005, Crowley Matoka et al 2012, Osborn & Smith 1998). While I want to disentangle legitimacy from empathy, for people to be able to care without having to understand, I still feel I need to justify writing about pain. I started interviews with pain experiencers by asking them broadly to tell me about their pain, curious to see how they would begin. Most often they began with a diagnosis, or, like me, with an event. So I begin my pain story in January 2015, when, just before I was to embark on a very different fieldwork, I was caught in a random street-‐fight walking home in Amsterdam. Four bones in my foot were crushed but I had broken bones before and optimistically, or naively, trusted when I was told I would be fine. I just had to navigate some crazy staircases and then, surely, it would become another funny story. Three months after the break my pain started to get worse, which, looking back I am sure is when my inflamed joint began to squeeze and damage a nerve but no one took me seriously. I didn’t take myself seriously. I was told it was normal to still have some pain so I assumed I was just feeling normal ‘broken foot pain’. But I began to fall apart, no longer coping with the smallest things. Throwing up from pain, I was brushed off as bulimic but increasingly I was convinced of a connection with my foot. I oscillated between hating myself for being so weak and
wondering if I was going crazy. As my self-‐doubt faded, I began begging doctors to believe my pain, to know it and to suggest anything to help me, but I was dismissed and told to push through and later, to “just find a way to get over it”. It wasn’t the most painful period but this time of not knowing was one of the most difficult. After seven months, I gave in and went home to Australia and nine months after the break my foot was opened up, pulled apart and bolted back together. Bones had rotated 90 degrees and had died. I woke from surgery to be told that their ends were amputated and thrown in the bin along with the inflamed joint that was
pinching my nerve. That’s when the burning pain began. I burnt all the way to my knee and even the water from the shower fell upon me like needles. Yet I was told the amputations would be very painful and again assumed I was feeling normal ‘reconstructive surgery pain’. How could I have known otherwise? A month or so later I was diagnosed with complex regional pain
syndrome (CRPS), a disorder associated with nerve damage and ‘phantom’, burning pain, as well as certain physical changes. CRPS is nicknamed the suicide disease and rated by the McGill pain
scale4 as more painful than amputation or childbirth but this is a meaningless rating of course,
not least because there are different degrees of CRPS (and childbirth) and mine was never classed severe. Nonetheless, I find myself using a rating system I don’t believe in to quickly legitimize writing about my pain. Maybe you will still think that I have made my pain bigger than it needs to be and I wonder that sometimes too. Most persistent pain stories I heard are much worse than mine. Spending eight months without ‘knowing’ and without care is nothing within the pain world. The average time for a CRPS diagnosis, for example, is four years (Harden et al 2007), by which point pain pathways are entrenched and more difficult to change. Though I’ve found it difficult, I am certainly one of the lucky ones. Yet, it made me wonder how pain is made known. How is ‘broken foot pain’, or ‘surgery pain’, or ‘CRPS pain’ known? How are these different realities of pain enacted and communicated? How is this part of interacting with pain?
My informants spoke un-‐reflexively of the “Pain World”, or the “Perth5 Pain World”, reminding
me of classic anthropological pain literature (Good, 1992) that describes worlds collapsing, shrinking into the orbit of pain. The pain world they spoke of however, was more expansive and referred to the network of healthcare professionals, researchers and pain experiencers
interacting with pain; the network that was my field site. I first inhabited a very solitary pain world, just me and my pain, and in some ways my fieldwork was more about getting out of the pain world than getting into it. I began with auto-‐ethnography but was always more interested
4The McGill pain scale was developed by the same people who developed the gate-‐control theory and is a
diagnostic and classificatory pain tool with pain descriptions and ratings. It is the basis for many pain questionnaires worldwide.
5
My fieldwork took place in Perth, the isolated capital city of Western Australia, home to about three
in the more expansive pain world and its different interactions with pain. I interviewed a variety of healthcare professionals (HCPs), pain experiencers (PEs), analysed formal and self-‐care texts and did observation in several pain contexts. I adopted different roles between and within different sites, from the camaraderie I could foster in PE interviews, often stemming from shared experience of unhelpful doctors, to aligning with the other end of the care relationship in the pain clinic, where I was treated like a medical intern. Yet wherever I was, my pain, of course, always came with me.
Coming to terms with Auto-‐ethnography
Auto-‐ethnography is a genre of writing and research that displays multiple layers of
consciousness, connecting the personal to the cultural (Hoppe 2012) and has been described as “an emerging qualitative research method that allows the author to write in a highly
personalised style, drawing on his or her experience to understand social phenomenon” (Wall 2006, p. 146). It is presented as a new ethnographic trend whose “status as proper research remains problematic” (Sparkes 2000, p. 22) but I prefer to think of auto-‐ethnography as only making explicit the role of the anthropologist as the principal ethnographic research ‘tool’. Instead of being perceived as a weakness, or source of shame to be concealed, Rapport and Overing (2000, p. 27) suggest that anthropology should exploit the intrusive nature of the self as an ethnographic source, and Davies et al point out that “we are always present in our texts, even when we write in so-‐called objective ways” (Davies et al. 2004, p. 365). A major criticism of auto-‐ ethnography is its lack of objectivity, which de-‐legitimises the knowledge it produces (Wall 2006) but as STS scholars have pointed out, even in scientific experiments that claim objectivity (see for example Harraway’s monkeys, 1989), the observer is always present. In auto-‐
ethnography, this can be “acknowledged, explored and put to creative use” (Okely 1975, p. 172). The term ‘‘observation’’ carries the misleading objectivist connotation that research object and research subject are clearly distinct entities (Hirschauer 2006) and auto-‐ethnography challenges the idea that social facts exist to be observed and carried into text. It seems then, a particularly fitting methodology for a research that itself asks about knowledge production and the
enactment of realities of pain. In both topic and methodology, my research questions the concept of an objective and observable reality that simply requires translation into language.
Ethnography, and auto-‐ethnography in particular, also begin the work of undoing the subject / object binary, which complements an exploration of interactions with pain as object and active subject.
Nonetheless, auto-‐ethnography attracts many valid criticisms and continues to be a method of inquiry that I’m not entirely comfortable with. Accusations of narcissism or navel-‐gazing can seem well placed (Geest et al. 2012) and indeed, being in the position to write a thesis about my pain is quite a privilege, though it was far from my first choice, second or third choice. I hope that finding my own parts in this story the least interesting and my unwillingness towards auto-‐ ethnography, prevents me from self-‐voyeurism. Medical anthropologists often research topics close to their personal experience (ibid.) and it may seem natural to be interested in topics relevant to the researcher but my interest in pain only flourished after I left the field and, curiously, only once my pain stopped being the main part of my life. Others reflecting on their use of auto-‐ethnography feel a moral obligation to use their voice to draw attention to a poorly understood experience, or to empower the patient voice (ibid.) and I would like to say I had such a noble motivation, that I was driven by indignation over the lack of understanding and care for pain experiencers. Indignation did develop during my fieldwork but when I first decided to research pain, I was too exhausted to feel anything like indignation. My body felt like it was filled with sand and medications made it difficult to think or sometimes even see for more than a few hours in the afternoon. I was struggling to get through the days. I wasn’t struggling to make a difference. I decided to use auto-‐ethnography for the rather uninspiring reason that it was one of the few things I felt was do-‐able while ‘doing’ pain. I thought that if I didn’t get well enough to get off the couch, I could at least write about that. It was a way to re-‐gain some control after a year of waiting to get better. It was a way to get back some part of my identity, as a student, to create some structure, while my life still centered around pain. My pain-‐self was still there, loud and belligerent, but I could at least add an anthropology-‐self -‐even on the nights on the bathroom floor-‐ and hope that I might regain other selves, other voices.
In my writing I slip between my anthropology-‐voice and my pain-‐voice, with the feeling that my pain-‐voice keeps the anthropology-‐voice in check. I can hear my lonely pain-‐self reminding me that to argue that pain does not happen in isolation, is not to say that pain isn’t isolating. My pain-‐self doubted the anthropological literature that described people who found a way to live positively with pain, cynically deconstructing stoic voices of pain experiencers and questioning the concept of ‘situated goods’, while my anthropological-‐self interrupted with the reminder not to impose my experience on other’s. Remembering this, I was forced to question the main assumption I held when entering the field -‐ that pain resists language – and realised how idiosyncratic the pain experience is, as I casually chatted with my informants about how differently we reacted to the same drugs, experienced or responded to pain. Pain experiencers tend to describe their suffering as unique but I found that my experience of pain, and CRPS in particular, was utterly banal. It was so far from unique that people described it with the exact
sentences that I used. Being interested in the language used to describe sensory experiences, however, I always asked informants to describe what their, for example, ‘burn’ felt like, looking for differences in ‘burns’. Nonetheless, as Hoppe (2012) reflected upon, auto-‐ethnography can give a shared language, which gave me more confidence and ideas of what I wanted to ask. One pain experiencer exclaimed in a Yoga for Pain workshop “I didn’t know there were this many words for pain!” and indeed, before each interview I always researched to learn the language of various pain disorders and of the well-‐known pain professionals I was interviewing. One of my informants pointed out that despite using ‘alternative’ therapies like meditation and hypnosis, my understanding of pain is biased towards a physiological explanation of pain, the explanation I personally find most satisfying for knowing and interacting with my own pain. While I tried to withhold my opinions so as not to bias my informants, sharing my experience fostered an inter-‐ subjectivity, which, despite its limitation as a research tool, has been described as the best we have (McClean 2011). Sharing my experience with PEs removed some of the moralising, doubt and judgment that pain experiencers come to expect (Osborne& Smith 1998). You could say we shared an ‘intercorporal’ (Merleau-‐Ponty 1964, in Coelho & Figueiredo 2003, p. 201) inter-‐ subjectivity, that allowed insight into difficult to describe bodily sensations, such as the intense bodily fatigue that often accompanies persistent pain. I hesitate to say that one cannot
understand persistent pain without feeling it but I certainly could not have understood it without my own experience. Pain itself does little to convey the slow, grinding chronicity of persistent pain and the fatigue and emotions that come with it. I couldn’t have found the words for pain without feeling it, just like I couldn’t now describe painless walking. While some criticisms of auto-‐ethnography seem misplaced, mixing it with formal interviews and observations certainly strengthened my research.
The Wider Pain World
When trying to gain access to HCPs and PEs, like Gerrits (Geest et al. 2012), I debated how and when to disclose my own pain experience, but after several rejections, I brought it to the fore and found that several HCPs were suddenly interested in me. One even wanted to swap an interview for a fleshy piece of my foot to use in his study. The healthcare professionals I
interviewed represented a variety of sometimes oppositional views but are all at the forefront of
pain care in Australia, itself a global leader in pain care and research6. Focusing on the ‘pinnacle’
of pain care opens up systemic, rather than individual criticisms of pain care. Pain experiencers
6
Australia was the first country to practice pain medicine as it’s own discipline, key figures in the
Australian pain world give trainings worldwide and the International Pain Society was headed by an Australian
Introducing the Healthcare Professionals*
Rheumatologist Alan Mills has forayed into pain research, not because he is a researcher but because “no one else was doing it”. He is known for opinions that go against the grain of established pain care.
Yoga for pain practitioner, Vanessa Grey, herself a former pain experiencer, changed career to teach mindfulness and yoga for pain.
Hypnotherapist, Tess du Toit, began practicing after years of unsuccessful treatment of her own persistent pain.
Physiotherapist Dr Lisa Scott, sees only the most complex Western Australian pain patients and teaches university courses in pain for physiotherapists. She is also involved with painhealth, an online platform offering advice and telecare for pain experiences in Western Australia.
Pain Specialist Michelle Jones runs a multi-‐disciplinary pain clinic and is known for her authorship of pain-‐care texts and development of STEPS self-‐care courses offered worldwide. She is also involved in pain awareness and painhealth. Within her clinic I also observed two other pain doctors, including Dr Erins.
Team manager of Michelle’s clinic and facilitator of pain education sessions, Rene Williams.
Pain specialist Roland Rogers, from a different clinic, is involved in international research into CRPS and helpfully told me I could drop his well-‐known name whenever I had to convince a HCP of my CRPS.
Nurse, Ellen Fisher, for whom pain management is everyday at a large Perth hospital.
Feldenkrais practitioner, physiotherapist and pilates instructor, Jackie Daly, who specializes in persistent pain and promotes active pain management.
Feldenkrais practitioner and physiotherapist, Anne Lin, who is also working with her own pain following a spinal injury.
General practitioner, Alex Lindsey, who concentrates on persistent pain and mental health.
*names have been changed
reminded me that finding health professionals who understand pain continues to be rare and that knowing pain and understanding do not necessarily go together. I had some ethical hesitations in asking PEs to tell me about their pain, worried that it would undermine coping mechanisms, such as ignoring pain,
yet PEs were very eager to talk and I had interviews lasting as long as three hours. One person asked if she would have to pay me to talk, which I find a sad comment on the scarcity of people willing to listen to a pain story. This lack of formal and informal care was expressed by all of my
interviewees in pain and interviews were often emotional. Finding this quite challenging, I preferred to concentrate on healthcare
professionals and observations of pain care, which was also more rewarding for my research questions. I also analysed several popular self-‐ care texts, including Explain Pain, Rewire your Pain and the Norman Doidge series, with my pain-‐self insisting that I wouldn’t add to stories of pain triumphalism.
I had originally hoped to do
observation in a bounded site but was unable at first to gain access. In the end I accessed multiple sites,
including a Yoga for Pain workshop, a pain symposium, and a pain clinic. Despite some ethical doubts, I followed the lead of Toombs (1995) to use my own experience of care as data, maintaining the anonymity of
my healthcare team. I often recorded my medical appointments and even stayed awake to observe one of my surgeries. Besides being a novel research technique this was one way in which my research helped me to deal with my own pain experience, by trying to turn something tedious and unpleasant into something interesting. I used my anthropology-‐self to get some distance from my pain-‐self.
The deeper I got into the pain world, the more diversity I found in pain care practices, leaving me worried that my formal interviews with a variety of HCPs lacked structure and continuity. This feeling, however, is an accurate reflection of pain care, where pain experiencers are often unsure who can help them and spend years juggling different pain cares. As well as formal interviews, I spoke with anesthetists, pain activists, gynecologists specialising in pain, an acupuncturist, trauma and orthopedic surgeons and many pain experiencers who either approached me while my pain was visible, or who had been friends for years with pain that I hadn’t known about. Learning from people, rather than
collecting data from them has been called the essence of ethnography (Spradley 1979, p 3) and I tried the practices of each of the professionals I interviewed and learnt tricks from PEs. If thick
participation is cultural knowledge recorded first in the anthropologist’s body and only later externalised for analysis (Samudra 2008, p. 667), this is certainly the anthropology I practiced. I wasn’t just told about medications, I absorbed them into my body. I wasn’t just told about yoga and mediation, I joined a workshop and experienced the challenge of conducting fieldwork while clearing my mind and suspending judgment. I’ve tried most of the typical strategies, including surgeries, ignoring it, a topical anesthetic, two typical chronic pain medications, several acute medications, several anti-‐inflammatories, visualisation, hypnosis, meditation, yoga, acupuncture, physical exercises, mirror therapy, left-‐right recognition computer programs, pacing, de-‐
Introducing the Pain Experiencers*
Kate introduced her pain as fibromyalgia, as well as
myofacial pain and chronic, acute sinusitis. Now in her 30s, she juggles her pain and fatigue with full-‐ time work and does her best to maintain a social life.
Dominique, in her 40s told me of an incident at work
that triggered shoulder / arm pain that for four years has prevented her from working, cooking, or wearing a watch. Her pain has effectively never been known, an experience she has found traumatic. Following the pain symposium we attended, she suspects she has CRPS.
Julie, in her 50s is a kind of second mother to me. As
children we would always push her up hills but I only realised with my research that I had never asked why. Nobody spoke of central sensitization in the 90’s but, drawing on her physio and feldenkrais training, Julie now believes this is one part of her pain and fatigue. She has managed to get her pain to the point where it doesn’t hugely impede her life.
Jenny gave me a chronological narrative of a life-‐time
of different pains, with repeated failures to know her pains and almost disastrous mistreatments.
*names have been changed
