Stigma is about devaluing and discrediting behaviours made by people towards those who have or are “different” from the average Joe or Josie Bloggs. For people experiencing and living with chronic pain, stigma may occur because the “average” experience of pain is associated with actual or potential tissue damage (or described in these terms) and for most chronic pain the “issues in the tissues” are less than expected by people holding a biomedical viewpoint. Add to this that most people in the world know about acute pain which settles as expected whereas chronic pain persists, seems “disproportionately” bad in comparison with what’s expected.
De Ruddere and Craig (in press) have reviewed the literature to understand what is known about stigma and chronic pain, and what can be done about it. I thought it an apt paper to include in this blog because almost every person with chronic pain has, at some point, said they don’t feel their pain is either being taken seriously, or is accepted as real, or feel like they’re not being believed. Of course, pain is not the only condition where self-report is the only thing that we can use to determine the experience – depression, anxiety, post-concussion syndrome, fatigue are among the common experiences that are not given the kind of acknowledgement that we give to fractures or appendicitis or asthma.
People living with chronic pain say their partners, family and friends don’t seem to believe them, and that health professionals think their pain is exaggerated, imagined. They feel they’re being told it’s their fault, to “pull yourself together”, just “harden up” and often feel they’re being told to go away because they don’t have a real problem. Whether this is in fact the case undoubtedly depends on the persons involved – but it’s a common story and one I’ve heard in my clinical experience over and over and over again.
I guess some of the worst things I hear about stigma is that experienced by people seeking help for their pain from health professionals. If things don’t seem to add up, in the eyes of the observer, then people experiencing chronic pain can get less sympathy, are disliked, thought of as less meriting help, and often suspected of simply wanting attention.
The effect of this kind of behaviour from those charged with the duty to care is on distress and disability. People who feel misunderstood or maligned by treatment providers may receive less care and as a result, are able to do less, and feel rejected – social rejection and chronic pain share some similar neurobiological pathways (Eisenberger, 2012). Additionally, because the people experiencing the pain probably also hold similar beliefs to those who reject them (because the most common beliefs about pain are that there’s something going on in the tissues, and pain should fit with that tissue damage), they begin to doubt themselves, question their own responses, wonder if they really are as badly off as they feel. I know I felt this during my recovery from mild traumatic brain injury, when I wondered if I was actually just wanting a break from having to do things – yet at the same time I couldn’t doubt the performance deficits I experienced every day, and the need to sleep for several hours a day because otherwise I just could not function.
De Ruddere and Craig posit some reasons for other people stigmatising those living with chronic pain. One is that with acute pain, behavioural responses are often involuntary, automatic responses such as reflex withdrawal, vocalisations (groaning), or facial expressions. These elicit a primitive caring response in most people. Yet with chronic pain, many of the responses are less reflexive, and more voluntary – such as withdrawing from doing things or describing pain. These are usually thought to indicate that we’ve thought about them, and we’re doing them on purpose or deliberately. When these behaviours take place alongside the general belief that pain “should” be acute and related to tissue damage, not showing automatic pain behaviours begins to look kinda fishy.
In evolutionary biology, altruistic behaviour towards others is based on an underlying assumption that if we do to others, they will do to us in turn. A sort of reciprocity. When people don’t look like they’re genuinely in pain (ie their behaviours aren’t the same as those carried out with acute pain), suspicions rise – “Are you really hurt, or are you wanting to get something for nothing?”
De Ruddere and Craig suggest some other theoretical explanations for the high level of suspicion applied to people with chronic pain, but I think this evolutionary one is an especially challenging one to deal with. Most treatment approaches attempt to upskill people living with pain to be able to communicate their problems effectively, and to reduce the frequency and interference of pain behaviour. This is only half the answer. We need to continue giving healthcare providers a deep understanding of a biopsychosocial approach: that pain is ALWAYS involves biological processes, psychological processes and is set within a social context, so that healthcare delivery goes well beyond assuming that “if the pain is gone the person is back to normal”.
Get this paper once it comes out in print. I think it’s time the social aspects of our pain management treatments were given more airtime, and this paper provides some exciting direction for future research and clinical practice.
De Ruddere L & Craig KD. (2012). Understanding stigma and chronic pain: a state of the art review. Pain.
Eisenberger NI. The pain of social disconnection: examining the shared neural underpinnings of physical and social pain. Nature Reviews Neuroscience 2012;13(6):421-434.DOI: 10.1038/nrn3231