A #doctor blogger talking about #chornic #pain

Now this doctor has realized there is most to the pain experience and equally understands how doctors can have a problem with communicating with chronic pain patients. It is a very interesting read  How doctors respond to chronic pain

"'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."

And then here... sound familiar. In one variation or another we fear what we say will be blamed for all our pain. If I am not coping well and depressed... the depression will be blamed for all my pain.

"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.'"

"'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 '"
It is very true. Often it seems it is not only a communication problem but this lack of interest in our pain... in our suffering. It seems we are never offered any solutions and help... anything to help manage the pain that is destroying our lives.

 He ends by stating it is important to listen and value a patients pain narrative. But this of course requires time... not giving us five minutes and rushing us out the door. Yes, we are patients that consume more time.

"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.'"


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