AUT researchers found that people will conceal their chronic pain to avoid ‘being seen as drug-seeking, lazy, or mentally unstable’.
Around 770,000 New Zealanders suffer from chronic pain.
Chronic pain is a leading cause of disability that affects one in six adults worldwide, but it is poorly understood by the general public and many health professionals. As a result, people who live with persistent or recurring pain may experience various forms of stigma.
Dr Debbie Bean, a Senior Research Fellow with a joint appointment across Auckland University of Technology (AUT) and Te Whatu Ora Waitematā, has published a research article in The Journal of Pain investigating the determinants and effects of chronic pain stigma.
Three themes emerged from the study: (1) faking it, (2) a spectrum of stigma, and (3) I hide it well.
“Because pain is invisible, it is often disbelieved and attributed to mental illness, or viewed as imaginary and ‘all in your head’. Mental health conditions, opioid use, pain beliefs, and unemployment are associated with experiences of greater stigma,” says Dr Bean.
“Our study shows that people with chronic pain will anticipate stigma, often concealing their pain and avoiding potentially stigmatising experiences across all areas of life. Consequently, stigma is associated with higher levels of isolation, depression, and disability.”
More than 200 people with chronic pain participated in the study, conducted by researchers at the AUT Health and Rehabilitation Research Institute, and Pain Management Unit at Te Whatu Ora Waitematā.
While previous studies have focused on individual aspects of chronic pain stigma, this is the first time that multiple determinants and effects have been considered together. The result is a comprehensive integrated model of chronic pain stigma that could inform future research and interventions.
Health-related stigma is common. Stigma can be defined as stereotypes or negative views attributed to a person or groups. It is characterised by exclusion, rejection, blame, devaluation, or social judgement.
People with chronic pain experience a spectrum of stigma, that ranges from little-or-none to widespread, from employers and colleagues, teachers, family and friends, and society.
Health professionals in particular were identified as a source of stigma. Although pain science has documented the physiological underpinnings of chronic pain, it is not adequately taught in medical training. Even clinicians who understand chronic pain and attempt to provide appropriate care can be misunderstood.
“While opioids are not recommended for treatment of non-cancer pain, they are frequently prescribed despite the guidelines. Inconsistent prescribing can create misunderstandings. If a clinician declines to prescribe opioids, this could be misinterpreted as disbelief of pain and patients may feel accused of drug-seeking, even when the clinician understands that the pain is real,” says Dr Bean.
“Education for health professionals has been shown to reduce mental health stigma, and the same may be true for chronic pain. Improving public knowledge, altering prescribing behaviour, and equipping clinicians with the necessary communication skills to discuss opioids with patients would be helpful.”
Self-stigma also occurs with chronic pain. Participants in the study expressed low self-worth and elevated distress.
“Clinical interventions may be beneficial if they challenge beliefs that pain must be either biomedical or psychological. One intervention that holds promise is acceptance and commitment therapy, which has shown to reduce self-stigma in substance use disorders,” says Bean.
“Other interventions may need to target societal views more broadly and the socio-political structures that enable the stigma in order to be more effective. These strategies include education, mass media campaigns, personal contact with people in pain, and protest.”
Dr Bean is a registered health psychologist with more than a decade’s experience working at an interdisciplinary pain centre. She is also Chair of the Institute of Health Psychology at the New Zealand Psychological Society.
In September, Dr Bean was awarded the New Zealand Pain Society’s 2022 Broadfoot Trust Prize for outstanding research in recognition of this study. Her research interests focus on understanding the interactions between psychological factors and pain.