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When patients think their problem is mysterious

Posted Oct 16 2011 2:15pm

This 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

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