The history of the stigmatisation of people with chronic pain is littered with broken lives and suffering. That a large proportion of this suffering is iatrogenic is indisputable. But no profession, and those that pertain to health especially, can exist outside of a dynamic and emergent relationship with the culture within which it is embedded, and which it in turn, helps to shape.
Cohen, Quintner et al wrote a brilliant review paper on the Stigmatisation of patients with chronic pain: The extinction of empathy (full article available at that link) in 2011, reviewing the concepts of stereotyping and stigmatisation, their relationship to chronic pain and the impact on clinical encounters.
There are some fantastic passages throughout the paper:
Given the increased scientiﬁc understanding of the neurobiology of nociception and the ready availability of a biocultural framework for evaluating pain, it seems paradoxical that stigmatization of the person with chronic pain persists in Australia. Perhaps Shah and Diwan were correct when they considered that the role of stigma “is a fundamental yet unexplored issue as a barrier to adequate chronic pain treatment.”
In this article, we explore the issue of stigmatization of pain sufferers and suggest that one of the principal reasonsfor this is the failure of health professionals to appreciatethat their own clinical reasoning and behaviour, which arelikely to be based on entrenched dualistic thinking, cancontribute to this process.
When sufferers of medically unexplained disorders (such as chronic pain syndromes) cannot fit into the conceptual frame of biomedicine and therefore cannot meet health professionals’ expectations of what constitutes an illness, their personal legitimacy is undermined. Indeed, Werner and Malterud suggest that the marginalisation of those with these conditions may have become culturally embedded.
New ways of thinking, initially by a brave few, and now by a growing number of members of the scientific community and health professions, are beginning to help break down the stereotypes and stigma associated with chronic pain, but as Cohen et al state above, there is still a way to go.
However there are some recent, encouraging, signs from society and culture too, that indicate that change may be afoot.
New hope for chronic pain sufferers
Comedian Wil Anderson has opened up about his prolonged battle with chronic back and hip pain.
“There has not been one moment in seven years when I have been completely without pain,” he revealed.
Anderson’s osteoarthritis is so severe he sometimes is unable to move.
“Sometimes my pain is so debilitating I can’t walk, can’t get out of bed.”
Unlike acute pain which is relatively easy to treat, chronic pain is a complex condition which can challenge GPs. There is no simple answer and medication has limited – if any long term effect.
The 40-year-old Gruen Transfer host says he experienced “massive, serious side effects” with conventional prescription medications.
He has been advised by doctors to delay surgery — a double hip replacement — but not until the technology and failure rates improve.
But hope may be on the horizon for Anderson and many like him living with chronic pain. Painaustralia is now providing GPs with easy access to a useful resource to help patients with chronic pain better understand and manage their condition.
Although, public figures and celebrities opening up about the health challenges they face can be a double-edged sword. Stephen Fry has openly discussed his mental health issues with his usual wit, intelligence and eloquence, and has likely helped thousands with their own struggles. Tiger Woods talking about his sacrum, probably not so much.
Jennifer Anniston’s portrayal of a woman suffering chronic pain in the upcoming movie Cake has been lauded in some circles as both powerful and a first in cinema. But there have also been less than flattering reviews
Cake review – an anti-vanity vehicle for Jennifer Aniston
But it won’t win awards, because it’s – admirably – light on histrionics; just a humdrum yet hokey study of the effects of chronic pain. Nor will it make any cash, for it’s about as fun to watch as sciatica. You just hope it was fun to make.
Aniston is Claire, whom a car crash has left with scars on her face and body and constant agony in her legs and back. More than that, perhaps, it’s rendered her permanently pissy: short of fuse, forever of headache, sleepless, no fun, low on compassion. Everyone is giving up on her: her husband (Chris Messina), her physical therapist (Mamie Gummer), her support group, which asks her not to return after she makes inappropriately congratulatory remarks about the suicide of one of the members, Nina.
Aniston’s drab-act is diverting, but it’s not enough to sweeten a character who is one hell of a pill. Was Claire at some point in the scripting supposed to be less crabby, more winning? Press material describes her as “acerbic” and “hilarious”, of which only one is remotely true. Despite its sour centre, Cake’s conceits quickly crumble, leaving just a half-baked pity.
I thought this review was interesting – the reviewer’s description of ‘Claire’ – short fuse, headaches, sleepless, no fun, everyone giving up on her and so on, will be poignantly close to home for many people with chronic pain. But the demand for a sweeter, less crabby, more winning character may subtly expose the culturally embedded stigma of people with chronic pain.
The comments after the review highlight how emotive this topic is, but they also highlight that regardless of whether the film is good or bad, whether Jennifer Aniston can really act or not, more people are talking about chronic pain, in new and broader forums than before. That has to be a good thing. Doesn’t it?
“But the demand for a sweeter, less crabby, more winning character may subtly expose the culturally embedded stigma of people with chronic pain”.
Yes indeed, good insight. It’s human nature to want all the good things in life – the happiness, the joy, the pleasant things. The ego thinks that this can be achieved through a process of striving for the desirable and resisting the undesirable. Life simply does not work this way. How is it we were not taught this in school?
When emotional pain arises, the ego says “No! Goddamnit, that hurts like hell”. But if not allowed its full and natural expression, emotional pain will end up in the body. The great fear is that emotional pain is never ending, so we must resist it. *The reality is that emotional pain has a natural life span*. Chronic physical pain is the result of disallowing this process. I understand this is easy to say. Depending on the severity of the pain, the process of allowing can be enormously daunting.
The more a doctor or therapist tries to get rid of pain, the more it gets locked into place. This is because the physical pain is a representation of the emotional. The client is ALREADY an expert at resisting, pushing away and attempting to fix the pain. He does not need yet another person attempting to do the same. The client needs to be given permission to locate the memory and express it fully without resistance and without shame. This achieved with empathy, absolutely the most powerful tool at our disposal, and the hardest to master.
Pain avoidance models of chronic pain have always seemed very solid to me. Along these lines, ‘Experiential avoidance’ is a useful term. http://en.wikipedia.org/wiki/Experiential_avoidance
Stigmatization is rampant and hugely unfortunate. While I may not be able to completely acquit my historical self, I like to believe that I am less guilty since adopting a biopsychosocial worldview. In my interactions with GPs, RNs, fellow physios, I hope to change the tune of the discussions most times, in a modest attempt to simulate larger scale change…will keep trying.
Keep fighting the good fight!