into the red sunset

What’s in a name? Why getting a diagnosis of chronic pain is important


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.

16 comments

  1. Great post Bronwyn, so many important issues raised in this quote:

    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 … 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.

    Put more philosophically: once a GP makes a diagnosis, the pain is thereby coordinated with a number of other experiences to which concepts can be applied. A diagnosis of chronic pain doesn’t merely function to recognize personal (private) pain; it also gives pain a role in human activity and the organization of human responses. A diagnosis of pain helps to coordinate an experience around concepts by which the patient and GP can make informed responses as to what is happening (“What has caused this pain?”, “How long will it last?”), and as to what will happen (“What will change as a result of this pain?”). It also allows one to tell others and get their help in understanding and dealing with the pain in the first place. Pain is not only a personal experience; it is also fundamentally associated with the need to “tell” someone else that the pain exists.

    1. Great points Simon. Do you think people inevitably tell someone about their pain, or is this brought about because of their need to convey reasons for the way they do things (ie to justify actions)?
      From what I’ve read it seems many GPs fear giving the diagnosis and when they do, can almost abandon the person – I suspect they feel helpless and don’t know what to do.
      One could then suspect that if a person doesn’t feel bothered by his or her pain, telling someone isn’t necessary because there’s no need for justification for their actions. GP’s on the other hand always need to justify their actions, and they can do this by referring on, or perhaps by negating the experience.

  2. “Do you think people inevitably tell someone about their pain” – I would say no. Pain is not a simple sensory message which inevitably causes certain behaviour. To complicate the question, the syndrome of reactions involved in pain is not easily understood as behaviour because many of the events are involuntary.

    A behaviour may or may not be indicated by a person in response to a given pain situation depending on certain judgements. Usually a person responds to pain not only according to what has stimulated her but according to her plans, purposes, expectations, current commitments etc. all of which are reason-governed in that they are accounted for in terms of her intelligent activity rather than in terms of mere involuntary (“inevitable”) responsiveness. An example might be a patient judging to report pain to a GP based on “the need to convey reasons for the way they do things”. It may be worthwhile to study common patient and GP judgements in diagnostic contexts.

  3. Have you read Hadjistavropoulos, Thomas, Craig, Kenneth D., Duck, Steve, Cano, Annmarie, Goubert, Liesbet, Jackson, Philip L., . . . Fitzgerald, Theresa Dever. (2011). A Biopsychosocial Formulation of Pain Communication. Psychological Bulletin, 137(6), 910-939. doi: dx.doi.org/10.1037/a0023876
    I think this neatly describes/explains pain communication across multiple systems. I agree, I don’t think there is a tidy X + Y = Z in pain, it’s a far more complex situation than this.

  4. I have that paper. “I don’t think there is a tidy X + Y = Z in pain, it’s a far more complex situation than this.” Very true: Pain is not merely a signal which causes certain behavior. Thanks!

    1. I think there has been a lot of bad research into back pain. One day doctors will hopefully get there act together and discover what it is that drives peoples spines into premature degeneration such as Facet arthritis herniated disks osteophytes degenerative scoliosis and other non negligible findings. Then they can focus on the prevention of painful degenerative disease of the spine instead of trying to treat it once it becomes severe and irreversible.

      1. Thanks Peter, I agree, there has been a lot of attention paid to weird structural changes in the spine, but rather less into why these changes occur. Unfortunatley, even if they find out why degenerative changes occur, this may not explain why some people develop low back pain and others don’t. The relationship between what’s going on in the spine and having pain isn’t straightforward, so it’s only a small part of the larger puzzle of pain.

  5. Reblogged this on Finding Out Fibro and commented:

    From all the research I have been doing, this is the one MAJOR failing that could painlessly, easily, compassionately be fixed by healthcare professionals realizing the grief that is provoked when you tell someone they are not going to get better, or that they should get better if only they were working harder or being a better person. Not helpful. Inviting someone to be a part of a long term healthcare relationship with goals and someone who calls and checks in on their patients from time to time is what seems to make a huge, massive difference in the quality of life and treatment outcomes of many with chronic pain disorders. I love how cleanly this article lays that side of getting diagnosed out!

    1. I kind of agree with you, but not completely. The thing I found from my research is that although it’s really hard to learn that your pain is going to be chronic, it’s critical for the person to hear it so they can put the search for a cure to one side, let go of the old “normal” and hoping that you’ll end up there again, and begin to develop a new sense of self. I completely agree that inviting someone to be part of a partnership is SUCH a good thing, but it’s not something many health care professionals, particularly medical practitioners, seem to be ready to do. I think part of this is the sense of helplessness that medical people have when faced with something that won’t get better.
      If a health professional does give the person the affirmation that pain will carry on BUT at the same time stays there to support that person, then they will have done a very good thing.
      Thanks for reposting!

    2. I agree. Before I started with my current GP, I asked him if he was comfortable with chronic, complex issues including pain. He didn’t bat an eye at it, and he’s done well to listen and be compassionate. He doesn’t call to check in or text me, but we are still building a relationship. Thanks for reblogging this. I plan to print out the article for my husband. While he’s very caring and compassionate, I’ve had trouble explaining the grief process for chronic pain and it’s an issue I’ve been grappling with lately.
      Thanks again.
      And thank you to the author, I’m having trouble letting go of ‘normal’ and trying to learn to live with pain. It’s dark and bleak but I am trying to find hobbies that suit my needs.

      1. Hi waxingturtle, isn’t it hard to let go of the familiar and loved? If it was easy, I’d be thinking that it wasn’t loved very much – that heartache is a good sign that it really meant something (and still does). Letting go of the old doesn’t mean abandoning it completely, nor does it mean it won’t be sad. Our memories of the past mean these things can still live on but letting go means no longer striving to do or be that person as much. I think it means saying “I am so glad I had that part of me, I remember what it was like, I loved it so much and now I treasure it. I’m keeping my eyes on what is right now, and loving what I may find out and love today.” I don’t think we move into future planning until we’ve made sense of what’s going on, and until we’ve decided that the person we are has yet to develop and begin looking for who and what it is we are. I think a lot less about doing and a lot more about being, that way what I do emerges from my sense of myself. And for me that means it’s OK to dabble – I don’t need to be expert. It means the process of discovering is just as much “me” as what I find out about myself at the end. Oddly enough I found that the more I am fully present NOW the more “me” I feel I am!
        Thanks for taking the time to comment, I hope you visit again,
        cheers
        Bronnie

  6. Hasty posting on my part, I totally agree that at some point hearing that you have chronic pain, that it isn’t going away, and that there is no magic bullet or cure is the quickest way to start the journey towards coming to terms with illness/pain/limitations.
    The way I was told was so horrible, and so callous and casual and thoughtless, not to mention they lied to me and told me I could cure myself if I worked hard enough, that I was left reeling for almost 18 months afterwards, still trying to figure out what was going on, still not accepting. If they had told me a little differently, or with any caring whatsoever, things might have been different for me. I might have gotten to the point I am at now a lot sooner. Who knows. Truthfully it isn’t too important at this point, but last year it still was! I have learned to accept my pain is here to stay, and is not my fault, and it is not my doctor’s fault for not wanting to figure out what is wrong, it just is. This is a whole new life, built around accepting what I cannot change and changing what I can.
    I really appreciate that this post laid out some of the probably reasons for why my diagnosis story went the disappointing way that it did. Figuring out some of the logic behind the avoidant and sometimes downright cruel behavior of my doctors has been a mission of mine lately. Putting the puzzle pieces together is helping me forgive them, which in turns helps me move on. Thank you for posting this!

    1. That’s atrocious! How awful…I think the empathy that we want as patients is eroded by lack of time, over-exposure to distressing things (and the need to put on a brave face if you’re the doctor – who wants to see a doctor that looks as scared as you feel!), and poor role modelling by senior doctors. It’s made worse by blaming the person living with pain for their situation – as if you haven’t tried hard enough to find an answer, done everything you’ve been told will “work”, and it STILL doesn’t go away. I also think health professionals are SO keen to work out how to cure that they’ve forgotten the advances we’ve made in overall health and longevity haven’t come from medical advances, but they’ve come from better hygiene, sewerage, water supplies and better nutrition. It might help keep things in perspective too, to realise that although we know so much more about neurological disorders like MS and MND and so on, neurologists have done no better treating these diseases than we have all done with chronic pain. The difference is that people with those disorders know from the moment they get them diagnosed that this is how it is. People with chronic pain don’t get that, we always have to contend with someone, somewhere telling us that They Have The Cure – if only we’ll pay for it, do these exercises (special ones), use this cream, take this pill (a blue one), have this procedure, this manipulation, this X, Y and Z.
      I hope you keep going with your posting and remember we’re all learning, none of us have The Truth, that’s why it’s science and not magic. Hugs to you!

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