Sticks and stones my break my bones, but words will never harm me – yeah right! Words have power when we’re looking for treatment, or we’re giving treatments for pain. I’ve written about the staying power of language used to describe back pain here.
But let’s look at a more distinct problem: diagnoses.
Diagnoses are, in the words of Annemarie Jutel, “the classification tools of medicine…” Sociologically, they segment and order bodily states, indicating what is and isn’t normal. “A diagnosis is integral to medicine because it organises illness, identifies treatment options, predicts outcomes and provides an explanatory framework (Jutel, 2009). ”
Diagnoses also give people permission to be ill. Being diagnosed replaces mystery with — well, something else depending on the label.
Getting a diagnosis indicating that chronic pain was not likely to be alleviated was a striking finding from my PhD research, and supported by numerous qualitative studies. What I found, and others too, was that once a person had been told that their pain wasn’t likely to go, that the disease was chronic and couldn’t be cured, it wasn’t long before people began to think about life with pain rather than searching for a cure.
It’s interesting that although I could find a lot of research looking at how doctors let people know they have cancer, or a life-limiting illness, I couldn’t find anything to show how doctors give someone the news that they have chronic pain. Anecdotally I have heard that doctors don’t like to tell people their pain is likely to be there “forever”, but I couldn’t find anything in the journals to explain what it was like to be the doctor in this situation. And yet it must happen – or does it?
Doctors use diagnoses to predict, to organise, to tell them what to do next. Chronic pain, because of its complex and disputed nature (is it illness? is it disease? is it physical? is it mental?) is one of those labels that violates these principles. A diagnosis of chronic pain, in many cases, means the doctor has no more treatment ideas, or at least, a very limited repertoire.
Let’s look at this from the point of view of the person living with chronic pain. For probably four or five years this person will have been looking for answers. Initially he or she will have been given some sort of diagnosis “low back sprain” or “whiplash”. This may have been extended and refined to become “z-joint dysfunction” or “disc bulge”. Maybe this will have been added to with names like “trigger points” or “myofascial pain”. Even “anterior pelvic tilt” or “muscle imbalance”. Perhaps “kinesiophobic”. Findings on imaging will have been negligible – or pointed to with a flourish: “There! There is your problem”.
With each label, a new set of predictions is made. “If you do X exercises, it will come right”. “Here, let me do Y procedure and you take this medication, and you’ll be fine”.
And each time, the person hasn’t responded. The feelings of hope go up with a new diagnosis, then plunge to the depths as the new treatment doesn’t work.
At the back of the person’s mind is the suspicion that this pain isn’t really going to go away. But it’s not until someone “official” makes a diagnosis, confirming the prognosis, that her or she can put away the ideal of “going back to normal” and begin to figure out how to be a person-in-pain rather than a person waiting for a cure. Because until someone official sanctions this suspicion, there still is this sneaking hope that maybe, just maybe, a cure for this pain will be found, if only they get the right diagnosis.
What makes it so hard for doctors to give this diagnosis?
I haven’t identified anything definitive, so this is speculation, but here goes.
Chronic pain is a disputed disorder. It lives between physical disease and mental illness. Often no physical cause can be found, and because of the legacy of Descartes, an assumption is made that therefore it must be “mental” or at the very least “biopsychosocial”. But not biopsychosocial in the way that I understand it, more of “psychosocial-because-I-can’t-find-the-real-problem”.
I also think doctors (and other health professionals) have a hard time admitting they can’t fix something. It’s difficult to say “here’s the boundary of medical science”. This is why so many people spend their lives looking for cures for cancer, spinal cord injury, rheumatoid arthritis, multiple sclerosis etc.
I think it’s emotionally demanding work. To tell someone “you have this chronic pain, you’ll need to learn to live with it” can provoke anger, grief, despair, distress. That’s not easy – especially if you’re a doctor who is a little fearful that he or she might have missed something. “What if there really is something treatable?”
It’s also an invitation to a long-term healthcare relationship. People with chronic pain don’t go away, they’re not palliative care. To some GP’s, people with chronic pain are SO difficult to deal with. They turn up at all hours, they’re distressed, they’re depressed, they’re needy, nothing works. Not the kind of patient a GP really wants to deal with.
Finally, I think it’s very difficult to be a GP who sees people with chronic pain because, seriously, what can you do for them? There are very few places for people with chronic pain to be referred. Few treatments. Nothing is very effective.
It’s like opening Pandora’s box. Once a diagnosis of chronic pain is made, this person will need to take time to look at their life and make changes. That’s terribly challenging work. Not really what a GP’s practice is for. Making life changes is personal, individual, takes time and people often fail and need to repeat the process. This is the nature of chronic disease management – it’s not about medication, it’s about examining and exploring what will help this person feel well.
And what did my research show? That those practitioners who did the “little things” like personalising an exercise plan, like agreeing to stick with the person as he or she finds ways around or with the problem, who phoned or sent a text to see how the person was getting on – these made all the difference.
So, one more piece of the puzzle of helping people live well despite their pain is letting them know they have chronic pain, that it won’t go away completely, and conveying your belief that they have the resources to live well and you’ll be there beside them. If that’s not all about a therapeutic relationship, then I don’t know what is.
Engel, George L. (1977). The need for a new medical model: A challenge for biomedicine. Science, 196(4286), 129-136. doi: http://dx.doi.org/10.1126/science.847460
Jutel, Annemarie. (2009). Sociology of diagnosis: a preliminary review. Sociology of Health & Illness, 31(2), 278-299.