When patients think their problem is mysterious

ResearchBlogging.orgThis post is sparked off by a Facebook discussion where someone (you know who you are!) asked what to do when patients hold entrenched beliefs about the uniqueness or mysteriousness of their situation.  They might say things like “I don’t think anyone know what to do with me”, or “I think because my situation is atypical, I don’t expect to respond normally”, or “herniated discs don’t usually shoot ALL the way to the foot”.  Does anyone else recognise this pattern?

The person who asked about this said the main problem was in trying to tell the person that his or her symptoms are not unique or weird, without taking away their “specialness”.  Sometimes, in trying to give accurate information, and pointing out that others have similar symptoms, the person can react as if they’re offended.  On the one hand, this person said, we are all unique and deserve to be treated as individuals and on the other hand there is a commonness in suffering that we should take comfort in.

In musing about this, I thought about some of the reasons people seek treatment.  While it’s almost a given that people are looking for alleviation of their suffering, there are a complex range of reasons that people come in to see a health provider, and not all of the reasons are evident even to the patient!

As an aside, I think it’s incredibly difficult to help some clinicians see that people think they’re logical and know the reasons for their actions, when in fact we are all influenced by an array of factors that are implicit and thus we’re not aware of their effect – more on this later.

Why do people seek treatment?

In a meta-analytic study by Ferreira, Machado, Latimer et al. (2010), the main determinants of care-seeking in back pain were

  • being female (OR: 1.67; 95% CI: 1.49, 1.88),
  • having had a bout of back pain before(OR: 1.45; 95% CI: 1.12, 1.86),
  • having higher levels of disability (OR: 1.92; 95% CI: 1.33, 2.78),
  • externalized beliefs regarding pain management (OR: 3.6; 95% CI: 2.1–6.0),
  • fear of future job impairment (OR: 3.07; 95% CI: 2.33, 4.04),
  • limited social functioning (OR: 3.07; 95% CI: 2.33, 4.04),
  • or those engaged in sports activities (OR: 1.3; 95% CI: 1.0, 1.7)

What does this tell us?

The authors suggest that “individuals seek care based on an interaction that includes their predisposition to use health care, the available resources and their recognition for the need of care”.  They add “disability, and not pain, is the strongest determinant of care-seeking behavior in people with back pain”, and suggest that interventions need to aim at matching expectations and reducing disability rather than focusing on reducing pain.

So, what to do when a person says their pain is mysterious.

If we consider that people who seek treatment are inclined to do so as part of their belief that treatment is important, as well as tendency to look for treatment (almost like a habit), maybe we need to look at what health providers (us!) do to maintain this habit.

By saying “my pain is different”, the person may well be doing what he or she has learned before – maybe they haven’t responded as expected with another provider, and been told their pain is “different”. Maybe they’re worried that you won’t be able to help them either.  Remember that intermittent reinforcement has a powerful training effect and may be influencing the expectancy of this person – they’re anxious to let you know they are hanging hopes on doing “something”.

I suggested reflecting the “meta-message” the person is telling you. What about saying “It sounds like you’ve had some trouble getting help with your pain. From all the things people have told you about what’s going on, what do you make of it? What’s your theory?”.  At this time it’s also helpful to ask them “what does that mean for you? Where does that leave you?”.

If the person describes a belief that doesn’t sound plausible, or has some catastrophic interpretation of what might be going on (like the “herniated discs don’t usually shoot all the way to the foot”), I’d ask if it’s OK to tell them what I understand might be happening.  I then ask the person if they’d be prepared to work with me on a series of mini experiments to help us work out what is going on.

It’s worth checking in with our beliefs about why people seek help for their pain.  And establishing whether there are things we can do to help people remain active and engaged with their own health management.

Ferreira, Machado, Latimer et al (2010) concluded that “values and attitudes that individuals have about health and the use of health services can be viewed as the bridge between social structure and the perceived need for health care; it is how the status of a person in the community, or the individual’s ability to cope with presenting problems, can modify his or her perception for the need to seek care.”
Ferreira, M., Machado, G., Latimer, J., Maher, C., Ferreira, P., & Smeets, R. (2010). Factors defining care-seeking in low back pain – A meta-analysis of population based surveys European Journal of Pain, 14 (7), 7470-2147483647 DOI: 10.1016/j.ejpain.2009.11.005


  1. Great post, Bronnie! Yes, you really need to inquire open-endedly like that, find out what it means to them — that they’re special? That they’re incurable? That no one’s listening? It’s easy to assume you know the answer, but you don’t, not without exploring.

    1. Thanks Dale. It’s amazing, though, that so few people actually do so – maybe it’s the time needed, the mindset that’s hard to change, the fear that they’ll open Pandora’s box – but so often patients say to me they haven’t understood what’s going on or haven’t been asked what they’ve heard. Empathy starts with listening, IMHO!

  2. Your post got me thinking about something – actually a whole lot of potential holes in the researchers conclusions…

    If I don’t think the medical professions can help with my pain, even though I really want them to, would I report that the reason for seeking care was for pain control?

    Or, if people in the medical professions have the belief that pain is immutable, and patients have the belief that pain is directly related to damage, would this in part explain why the research suggests that people come to treatment for loss of ability?

    Would someone come to a medical professional for loss of ability if they did not have pain? I cannot remember the last person who came in unconcerned about their pain, so why would I even consider not providing interventions to help with their pain as well as their function and quality of life. I understand that we shold not put all the focus on the pain, but the view that changing pain is not one of the patient’s expectations is ill-considered.

    If the person is involved in any system in which they have disability insurance, of course they will state that the reason for seeking care is disability – that is what they get paid for.

    Did any of the research ask the person to state whether it was the pain rather than the disability that brought them to the health professional? Or even better did they ask whether it was the pain-related disability versus the disability itself, or ask whether help with their pain was one of their expectations?

    A related important point is that pain intensity is not directly related to pretty much anything. So were the researchers looking to see if people with more pain were more likely to seek care? if so, of course they will find no relationship.

    If nothing else, we need to really have a close look at such simple linear thought processes.
    Pain is complex, and chronic pain even more so, and the lived experience of pain even more so. We can help some by focusing on function. We can others (there will be overlap) by focusing on pain. Providing interventions with the view that ability and pain are inter-twined will likely allow us to help more people than focusing on just one.

    1. I agree with Neil about the research. The rigidity of the observer colors the scope and depth of understanding. It is like the cynics that believe that pain and disability of a person involved in litigation regarding their pain and disability, decreases or ceases after the litigation is over. In my experience a verdict has never healed a patient.

      The interplay between pain and disability is sometimes simple and often layered with complexity. In my experience the longer the issue has gone on the more layers there are, psychologically involving the very real autonomic neuroendocrine system, the hypothalamus-pituitary-adrenal axis, the sympathetic neural axis and sympathetic adrenal axis. I am only beginning to contemplate and understand(simple-minded organism that i am) some of these dynamic and fascinating relationships. I am just saying that it is easy for so many to cop the cynical attitude for the sake of ego preservation and to feel “right” scientifically, but it doesn’t seem to help the patient struggling to understand why they are in pain.

      I like the “So, what to do when a person says their pain is mysterious” section. It seems familiar to my approach of gently challenging the patients frame of mind and understanding.

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