That [Kahlo] became a world legend is in part due to the fact that … under the new world order, the sharing of pain is one of the essential preconditions for a redefining of dignity and hope. John Berger
Please don’t come back!
My forehead thumped down on my desk after a ten minute appointment that had stretched out to over half an hour, I felt completely exhausted and still I had another 17 patients to see and I was now running 25 minutes late. It wasn’t just that I felt exhausted, I felt useless and demoralized and more than that, I felt angry, really pissed off.
I had spent the last 30 minutes listening to Sharon describe her pains, which shifted from the somatic – how they feel, to despair – how she feels, and anger – how she feels about me. Why didn’t I know what was wrong with her? Why didn’t I refer her for more investigations? Why didn’t I send her to a [another] specialist? Why didn’t I listen? At some point I tried to introduce the idea that perhaps a pain-psychologist might help but this merely ignited the oil I’d been trying to pour on troubled waters. “You don’t even know what’s wrong with me and now you’re trying to tell me it’s all in my head, you’re not listening to me!” she all but screamed at me, tears welling up in her eyes. “No, no, no, not at all!” I actually held my hands up in front of me in self-defence, “but pain, whatever the cause, is always emotional and physical.” I believed what I was saying as I dug myself deeper into a hole I wasn’t going to dig myself out of. She was in fighting form and I was floundering. She took advantage, “You’ve done nothing for me, nothing! I want to see someone else.” I’ve been her doctor for almost 10 years and have seen her health deteriorate dramatically, her marriage take the strain and recover, her children in and out of illness and her husband through his redundancy and depression and more. I’d visited her at home and referred her to rheumatologists, physiotherapists and a pain clinic. I felt like I had nothing else left to offer. Her killer blow left me speechless. “I don’t know what to say,” I admitted, defeated, barely able to maintain eye-contact. She stood up and left.
The sufferer is in a state of high alertness and of anger looking for a cause. What strikes me is that (in my case anyway) anger comes before the pain: a wash of strong, predictive, irritation emotion that I don’t feel at any other time. Hilary Mantel
I’ve had this consultation in various forms too many times to count and I’ve discussed the problems with colleagues enough to know I’m not alone. Why then is it so hard for doctors and patients to cope with chronic pain?
Restitution and chaos
Yet most people who decide to become doctors respond to a deep intuition about life and their own lives. To become a doctor implicitly places us on the side of those who believe that the world can change – that the chains of pain and suffering in the world can be broken. For every medical act challenges the apparent inevitability of the world as it is, and the natural history of illness, disability, and death. Every antibiotic, every surgical intervention, every consultation and diagnosis becomes part of an effort to interfere with the “natural” course of events. Thus, at a profound, even instinctual level – because it precedes rational analysis – people become physicians to find a way to say “no” to disease and pain, and to hopelessness and despair – in short, to place themselves squarely on the side of those who intervene in the present to change the future. Jonathan Mann
This moving statement helps to explain why responding to our patients pain, especially chronic pain for which we emphatically cannot say “no”, is such a challenge. We are naturally solution-focused and the stories doctors like to tell about our work and our patients like to tell about their illnesses is a ‘restitution narrative’ in which illness is overcome and good health restored. We find it difficult to describe alternative narratives and this leaves us and our patients with chronic pain deeply frustrated. Doctors who cannot make their patients better, or even relieve their symptoms, suffer crises of identity and purpose and seek to avoid the situations that make us feel like this. In cancer care, barely 2% of spending is on palliative care and the proportion is even less for other diseases where suffering is at least as unpleasant and prolonged. Doctors have traditionally abdicated responsibility for the relief of suffering to nurses and now we’ve created specialist pain and palliative care services to do this difficult work for us. And yet our patients still come back to us. And then what happens? Instead of restitution we end up with chaos. In a chaos narrative, patients and doctors are stuck. According to medical sociologist Arthur Frank, “people live chaos, but chaos cannot in its purest form be told”, “if medical communications often fail people living in chaos, it is equally true that living in chaos makes it difficult to communicate”. Doctors and patients with chronic pain often find ourselves lost for words as I did with Sharon. This is one reason why we stop talking altogether and resort to questionnaires from which we choose words like burning, aching, sharp, dull, stabbing, gnawing, shooting, throbbing etc. instead of exploring narratives.
Another patient came in to see me, full of anger and frustration. Over and again she said how sick she was of explaining to other people why she couldn’t come out, help out or do the things she used to do. I hardly had a chance to speak, every now and again she challenged me to offer her an investigation or a treatment she hadn’t tried that would relieve her pain or chronic fatigue. I knew her well, but had failed her several times before and she no longer saw me as her usual GP. As gently as I could I asked her to describe why it was such a struggle to explain how she felt and she said that she had given up and how isolated she was. I said that in my experience this was all too common and asked if I could show her something that might help. When I showed her the Kahlo picture (above) she burst into tears.
Chronic pain extends to the limits of language and beyond. This was the first time I’ve tried showing a picture to a patient – and it felt very odd, it’s not in the NICE guidelines for chronic pain, but having researched this essay I was acutely aware of how words often fail. The tension in the room was relieved when words were no longer necessary.
Listening to accounts of pain
Patients’ accounts of pain are valued by doctors for the contribution they make to a diagnosis, to help, for example distinguish between the recurrent, severe, unilateral headaches lasting up to 3 days with nausea that typify migraines and the recurrent, severe, unilateral headaches with a watering eye that can last for a few weeks, that typify cluster headaches. I remember vividly a lecture from a distinguished neurologist who explained that we could diagnose headaches by watching him listen to a patient’s history. Listening to a patient describe a ‘feature-full’ migraine, he would be alert and interested, but listening to a patient describe an equally disabling, but ‘feature-less’ chronic tension headache, the neurologist would look bored and distracted. Doctors often loose interest once they’ve got the information they want.
We are taught to take a clinical history by listening selectively to our patient’s stories to remove the particular, subjective features, which are deemed irrelevant to the diagnostic science of medicine.
I learned early in my life that a pain is almost never just a pain. The ripples spread from the nervous system into the sufferer’s whole life. If you stub your toe or burn your finger, it hurts but it’s quickly over. Anything more complicated – and especially the kind of pain that is recurring or chronic – impacts on the patient’s personality and relationship with the world. Pain does not happen in a laboratory. It happens to an individual, and there is a cultural context that informs the individual’s experience’. What a pain is, and whether it matters, is not just a medical question. Hilary Mantel
Philosopher Havi Carel uses the term “epistemic injustice” to explain the gap between what doctors want to know and what patients want them to know. Our refusal to pay due attention and respect to our patients’ account of suffering is a “wrong done to someone specifically in their capacity as knower”. At its core is the “denigrating or downgrading of [patients] testimonies and interpretations which are dismissed as irrelevant, confused, too emotional, unhelpful, or time-consuming”. All of which must (ought to be) be familiar to doctors who have struggled with patients in chronic pain.
Patients give their bodies over to doctors and hospitals only to encounter inattention and indifference, not because they cannot express their suffering, but because their language is unvalued and unrecognized in medical culture.
Doctors are taught to be sceptical of patients’ accounts, treating them as unreliable, insufficiently articulate, and subordinate to their own interpretation. But a degree of scepticism is necessary, not simply because accounts are sometimes inconsistent and inauthentic, but because accounts of suffering serve a multitude of context-dependent purposes and warrant a wide range of responses, for example, not everyone wants sympathy or action.
For patients in chronic pain questions such as, “Why me? Why now? Why does is hurt so much? Why can’t you tell me what’s wrong? Why can’t anyone help?” – and, just as important, their own, tentative answers to those questions – still need acknowledging even if they cannot be answered. When Sharon accused me of not listening to her, the problem was not simply that I was not listening, but that I was listening in the wrong way, I had failed to acknowledge her suffering and she didn’t believe that I believed her. In order to ask the right questions about pain we have to unlearn what we have learned about taking a clinical history; we cannot presume to know about suffering from a clinical history.
The pain with no name
The pain clinic, neurosurgeons and psychologists discharge patients when their course of treatment is over, relieving them of patients for whom “nothing more can be done”: “I am discharging this patient back to your care”, “surgery was not indicated”, “your patient wasn’t suited to the psychological milieu”, “no cause for your patient’s pain was found”, “serious pathology was excluded”. As medicine becomes more specialized and fragmented, it is increasingly common for patients to be discharged back to the GP with the specialist satisfied that their organ of special interest is not responsible for the patient’s symptoms: “non-cardiac chest pain”, “functional abdominal pain”, “referred knee pain”, “mechanical back pain”. Our patients are rarely ever satisfied with the lack of diagnosis and the GP remains to face the patient’s pain and frustration. GPs are the ones who have to care for patients for whom “nothing more can be done” or for whom, “no cause for their pain can be identified”.
On the psychological level recognition means support. As soon as we are ill we fear that our illness is unique. We argue with ourselves and rationalize, but a ghost of the fear remains. And it remains for a very good reason. The illness, as an undefined force, is a potential threat to our very being and we are bound to be highly conscious of the uniqueness of that being. The illness, in other words, shares in our own uniqueness. By fearing its threat, we embrace it and make it specially our own. That is why patients are inordinately relieved when doctors give their complaint a name. The name may mean very little to them; they may understand nothing of what it signifies; but because it has a name it has an independent existence from them. They can now struggle of complain against it. To have a complaint recognized, that is to say defined, limited and depersonalized is to be made stronger. John Berger
Brenda recently joined our practice. “Doctor, I have to tell you, I have cancer and a headache and I’m not worried about the cancer.” It was the first time we had met and I was the first doctor she had seen in years. “I have seen about the cancer on the telly, and I know that a woman of my age shouldn’t have no bleeding and that means it’s cancer and they’re going to do an operation and I’ll be ok.” This is exactly what she said and though it’s unusual that someone is so direct, it serves my point well. “It’s the headache I cannot stand doctor, what is the cause of it?”
Pain we cannot explain is frightening because of what it might be. Even though there is little or no relationship between what we can see from scans of your knees or back and the amount of pain in you’re suffering we make good use of the therapeutic value of explaining your pain in terms of arthritis or a slipped disc. Brain scans are of no use at all for the vast majority of headaches. The resulting anxiety is felt most acutely by patients, but for doctors dealing with headaches, a great deal of the variation in specialist referrals is due to our own inability to cope with uncertainty.
The uncomfortable truth is that most of the time we just don’t know why pain hurts so much.
[Pain is] … a Cartesian dualism by its subdivision into “sensory” and “psychological”. This is an intellectual artifice invented to preserve a concept of divided brain and mind. There is not a scrap of physiological or psychological data to support the dualism. (Wall see Diski / Jean Jackson essay)
In seizing upon simple explanations we contribute to the shame and stigma felt by people suffering chronic pain. Faced with chronic pain from undiagnosed endometriosis, author Hilary Mantel experienced this:
I was aware that my condition was exacerbated by stress, and I knew that if I confessed to this, stress would be blamed for everything … besides, every visit to every doctor would begin with a lecture about my weight.
The loneliness of pain
I think therefore I am in pain quickly becomes I think therefore I am alone. Jenny Diski
“I’ve had this since university, but none of my friends know about it.” Toby, a 27 year-old accountant looked fit, athletic and confident. He was asked to attend the surgery because everyone on our list with inflammatory arthritis has to be assessed for his or her cardiovascular risk factors. He has arthritis in his left knee. “Do you think I’ll ever be able to play tennis again?” he asked me. This was yet another ten-minute consultation that extended well beyond its brief and timeframe. The last time he played tennis was at university, six years ago. “There are weeks when I don’t see anyone except at work, I can’t stand in a bar, dance in a club, or even walk anywhere. I don’t want anyone to see me when I’m like that.” “So what do you do?” I asked, “Nothing”, “Nothing?” “I just stay at home watching TV, I don’t even answer the phone, I don’t want to have to explain or make excuses. After a while, people stop asking.”
“Since you ask, I do still get headaches, almost every day,” I interviewed my wife for this essay. “Rarely a day goes past without a headache. They’re horrendous, they’re from the back of my neck to the top of my head, they’re exhausting. If I work for a day, they’re twice as bad for the next three days. I love to swim, but twenty minutes of swimming brings on a migraine – once a week I can just about bear it, but I can hardly speak for most of the rest of the day. They make me feel irritable which I hate, so I avoid people until they settle down. They’ve been like this for years; I’ve seen GPs, neurologists, physiotherapists, massage therapists and a psychiatrist. I’ve had acupuncture and done yoga, but they’re no different now from how they were 15 years ago, and I expect they’ll be the same in another 15 years.”
People with chronic pain grow tired of telling the same story over again. There is none of the drama of cancer or an attack as in heart, gout or the runs. Chronic pain is dull and exhausting. Most of my patients with chronic pain are tired of making excuses, trying to explain why they cannot join in or help out. ‘No-one gets flowers for chronic pain’, most suffering goes on without witnesses.
(Pain) shows us, too, how those around us
do not, and cannot, share
our being: though men talk animatedly
and challenge silence with laughter
and women bring their engendering smiles
and eyes of famous mercy,
these kind things slide away
like rain beating on a filthy window
when pain interposes. John Updike (quoted in Leder)
Doctors are uneasy about spending time with the lonely. In an age of ever increasing demands for healthcare productivity, where the heavy hand of state surveillance scrutinizes the details of every clinical encounter, doctors feel increasingly anxious about consultations spent listing, bearing witness to suffering or providing comfort instead of diagnosing and treating, measuring vital statistics or giving lifestyle advice, all of which are recorded measured and paid for. How close I came to sticking to the cardiovascular risk-factor script when Toby came in, but how much more I learned by discovering about his isolation, his fears and his experience of chronic pain. It’s a tragedy of modern healthcare that we spend so much time with people who feel perfectly healthy, yet have risk-factors for disease such as raised blood pressure or cholesterol, and yet have so little time for people who are in pain all the time, but have nothing to show for it and nothing to measure.
Lonely patients are twice as likely to visit their GP, and yet the blogs and other testimonies of people with chronic pain are full of people who have given up going to their GP, often because their GP has given up on them. I know the feeling of despair when Sharon is on my appointment list, “Why does she keep coming back? What can I possibly do?” It is this despair that’s motivated this essay and driven others away.
It is little surprise that patients with chronic pain experience acutely the sense of being unwanted and unwelcome.
Chronic pain patients sufferers typically report experiences of isolation and alienation from their physicians and providers, from their care-givers, and even from their own bodies. … chronic pain sufferers rate the alienation they experience from their physicians as qualitatively worse than alienation from loved ones. Daniel Goldberg
Pain and the body
The healthy body is transparent, taken for granted. This transparency is the hallmark of health and normal function. We do not stop to consider any of its processes because as long as everything is going smoothly, it remains in the background.“The body tries to stay out of the way so that we can get on with our task; it tends to efface itself on its way to its intentional goal.” This does not mean that we have no experience of the body, but rather that the sensations it constantly provides are neutral and tacit. A good example is that of the sensation of clothes against out skin. This sensation is only noticed when we draw attention to it, or when we undress. Havi Carel
Chronic pain is a constant reminder of a broken body. In Kahlo’s self-portrait above, the white straps represent the metal corset she had to wear after she broke her spine in a coach crash as a young woman. They also represent being chained to a broken body – she cannot escape her shattered spine or the nails in her flesh. She is beautiful and sensual, but the biggest nails are over her heart because the pain of love is as real as any other, and her face is brave and stoical and yet tears roll down her cheeks. The land behind her, the context in which she stands is barren and forlorn.
Marian came in with her husband to ask if I could help with his impotence. He looked down at the floor and didn’t seem too keen to join in the consultation. I was prepared for this because we had discussed his problem when he last came in alone. It wasn’t that he was impotent, but that even when they made love as cautiously as possible, his back-pain afterwards was so severe that it was impossible for him to continue waiting tables for the next couple of days and his job, at one of London’s finest restaurants, was on the line. “Everyone who waits tables has back pain”, he explained, “so you don’t talk about it, you certainly don’t complain about it, you just get on with it. And you certainly don’t take time off for it.” Pain’s isolating tendencies have no respect for sexual intimacy.
My motivation for writing this essay came out of despair. My intention was to confront and examine why I felt like that and in my conclusion I will try to articulate what I might be able to do about it.
In her essay, The Art of Doing Nothing, Iona Heath explains that, “in medicine, the art of doing nothing is active, considered, and deliberate. It is an antidote to the pressure to DO and it takes many forms.” Too often when confronted by patients which chronic pain, we “do something” in order to get rid of them, we send them for another investigation or another opinion or we prescribe more drugs. I don’t doubt that this partly explains why the rates of deaths from prescription pain-killers are so high. Another reason for “doing something” is because chronic pain traps us in the present and destroys a sense of progress. “Doing something” sets us in motion again, even if we’re only going round in circles.
“Doing nothing” needs to be qualified, it is far from passive and far from easy. Heath wrote her essay at the end of a long career distinguished by exceptionally deep and considered reflection. Instead of “doing something” we should learn again how to listen, think, acknowledge and bear witness.
Listening to stories about chronic pain makes doctors feel helpless, exhausted, anxious and at a loss for words. Paying close attention we might recognise that this is because the restitution narrative is inadequate and that we are trapped in chaos. I’ve explained how to listen for these different narratives in a recent essay about forgiveness: it’s both a warning and a ray of hope that we might be stuck in chaos for a long time (in the case I discuss, it’s 18 years). Recognising this is in itself a therapeutic opening. As a doctor I must resist the temptation to push toward this opening prematurely. The chaos narrative is already populated with others telling the ill person that “it can’t be that bad”, “there’s always someone worse off”, “don’t give up hope”; and other statements that ill people often hear as allowing those who have nothing to offer feel as if they have offered something.
To deny the living truth of the chaos narrative is to intensify the suffering of whoever lives this narrative. The problem is how to honor the telling of chaos while leaving open a possibility of change; to accept the reality of what is told without accepting its fatalism. Arthur Frank
When Frank wrote his classic book on medical narratives, The Wounded Storyteller in 1995, he wanted to help clinicians listen to their patients. He wanted to show that the stories patients tell make a moral case for doctors to be transformed by bearing witness.
Bearing witness is different from witnessing alone. Any doctor who has felt tired or forlorn after spending time with a patient in chronic pain, understands the burden that we feel when our patients share their suffering. We know that this is hard work, indeed, compassion means ‘to suffer together with’.
Chronic pain blogger Jessica Martin offers us a mantra,
I don’t want you to save me, I want you to stand by my side as I save myself.
The word mantra comes from manas (mind) and tra (liberate). The repetition of a mantra is transformative and this captures very well the transformation that doctors need to undergo to better serve our patients with chronic pain. Finding the right balance of proximity and distance is a challenge. Too close and we project too many of our own feelings on our patients, too far and we have abandoned them.
Proximity demands recognizing that yes, the monster is in the room and that the clinician take a stand with the patient in facing that monster. The first and crucial clinical move is to express the commitment to stay with the patient, to be there to do whatever can be done. It is an enormous defect of health-care organizations that professionals often cannot express this commitment because there are constant territorial disruptions over who stays how long and does what. This structured disruption of continuity of relational care is more than an organization problem; it is a moral failure of health care, deforming who patients and clinicians can be to and for each other. Arthur Frank
Writer Susan Sontag wrote about her experience of suffering as she endured two different types of cancer. She also wrote books about how we respond to images of suffering. She clearly wants her writing to give access to what is real, to create knowledge and the conditions for compassionate understanding and ethical action. Indeed, the project of many of Sontag’s best known, early essays is to protect reality from the distorting influence of representation. She wants her essays to affect and change minds and culture (see Ann Jurecic).
Frank’s final narrative is the quest. For the last two months while researching this essay I’ve been swimming in narratives of chronic pain. The chaos narrative is one that cannot be told and so it is perhaps little surprise that they are hard to find. When the story finally can be told, it is the quest. Jessica Martin’s excellent blog, ‘No-one gets flowers for chronic pain‘ is a great example.
Quest stories carry the unavoidable message that the restitution narrative will, one day, prove inadequate. Quest stories are about being forced to accept life unconditionally; finding a grateful life in conditions that the previously healthy self would have considered unacceptable.
Lastly, taking care of patients suffering chronic pain is one of the hardest things I do as a GP. It’s been my experience that patients quite frequently realise this too.
My other concern is with the doctors and nurses who have to deal with patients who are in pain. I think it must be a depressing and unsettling business, unless you are well-trained and supported. Sometimes medics seem callous, and I often wonder if they are frozen because they are afraid. People who are suffering often have an aura of unapproachability. They are cut off, turned inward, preoccupied with their inner experience. Pain requires a kind of concentration, and it’s easy to feel helpless and useless in the face of the patient’s otherness. What healers need to do is muster their own resources of personality and professional knowledge and address the fear as well as the pain: to provide reasoned reassurance, information, and above all, hope. Hilary Mantel
Hilary Mantel quotes © Copyright 2013 International Association for the Study of Pain. Reproduced with permission. All rights reserved.
References and further reading
Pain is weird. Fantastic overview from Paul Ingraham – Painscience.com
The Buddhist practice of Tonglen uses things we find difficult to “wake up” instead of being a big obstacle. We learn patience, compassion etc. from people who push our buttons. “The job of the spiritual friend is to insult you … you need people around to provoke you so you know what you need to do.” It has been very useful in thinking about how I manage patients with chronic pain. The key is to engage with the difficult emotions and find better ways to cope rather than avoiding them.
No-one gets flowers for chronic pain. Great chronic pain blog demonstrating narrative as quest.
How to understand someone with chronic pain. Good advice via Wikihow
Spoon theory: A simple way to explain chronic pain to others
Body of work. An author, Barbara Gowdy – who lives and writes with, but not about, chronic pain
The Lived Experiences of Chronic Pain. Daniel Goldberg 2012
Asking the right question about pain: Narrative and Phronesis. Arthur Frank 2004
Illness as Narrative. Ann Jurecic 2012
Stigma, Liminality and chronic pain: Mind-body borderlands. Jean Jackson American Ethnologist 2005
Mantel_IASPInsightJune2013 copy © Copyright 2013 International Association for the Study of Pain. Reproduced with permission. All rights reserved.
The Compassionate Brain: Humans Detect Intensity of Pain from Another’s Face http://cercor.oxfordjournals.org/content/17/1/230.full
Pain: Science, Medicine, History, Culture. Wellcome Collection.
Why is is so difficult to find better methods of chronic pain management? This ain’t livin’ blog
Psychological therapy for adults with longstanding distressing pain and disability – See more at: http://summaries.cochrane.org/CD007407/psychological-therapy-for-adults-with-longstanding-distressing-pain-and-disability#sthash.Se27mPZK.dpuf
The best evidence strongly indicates that these stuctural findings on X-Ray and MRI are not clearly related to the onset, severity, duration or prognosis of low back pain http://www.bodyinmind.org/spinal-mri-and-back-pain/
Healthtalk online: Videos of patients discussing life with chronic pain: http://www.healthtalkonline.org/chronichealthissues/Chronic_Pain
“The placebo effect is the effect of everything surrounding the fake pill, or the real pill,” he says. “It’s the compassion, trust, and care. It’s the ritual and symbols. It’s the doctor-patient interaction.” http://www.fastcoexist.com/3016012/the-placebo-effect-is-real-now-doctors-just-have-to-work-out-how-to-use-it
Roy Porter: Pain, Rey observes, remains poorly understood because it ‘has no clearly defined status’; all divisions between ‘real’ and ‘subjective’ pain, having been founded on archaic metaphysical body/mind dualisms, are plainly problematic, not to say question-begging. LRB
Pain Toolkit. Resources for living with chronic pain. Excellent UK website
Living With Arthritis
Pain. Is it all in your mind?
Understanding pain in 5 minutes