“The main finding we hadn’t anticipated and measured with other questionnaires was the finding that people living with pain try to keep it a secret and conceal it from others in order to prevent social judgment or stigma. This came through very strongly in the qualitative component of the study. People also described feeling very isolated and alone with their pain, and this is an important area that we’d like to better understand and provide people with support.” –Debbie Bean, Auckland University of Technology
Historically, people with a variety of different diseases, from leprosy to mental illness, have experienced stigma – “stereotypes or negative views attributed to a person or groups of people when their characteristics or behaviors are viewed as different from or inferior to societal norms,” as one study put it. This certainly also applies to people living with chronic pain conditions, including migraine, yet an integrated view of the contributors to pain stigma, and the effects stigma has on those who face it, has remained elusive.
Now, researchers from Auckland University of Technology and Waitematā District Health Board in New Zealand report results from a mixed methods study that uses quantitative and qualitative approaches to better understand pain stigma. The quantitative data show that having a mental health condition, higher use of opioids, being unemployed, and viewing one’s pain as a medical condition rather than as a psychological one were all significant contributors to stigma. In turn, stigma predicted greater disability and depression, as well as less social support.
Qualitative findings from the responses of study participants to open-ended questions about their experience with stigma supported the quantitative results.
Beth Darnall, of Stanford University School of Medicine, US, wrote to Migraine Science Collaborative in an email that the new research helps illuminate the social aspects of the pain experience, including the difficulty of living with a condition that is usually “invisible” to others, and especially the challenge of a person’s pain not being believed by others.
“The social dimensions of pain are vitally important and influence health outcomes,” she explained. “Yet, historically, they have been minimized in the assessment and treatment of pain. This and other studies are highlighting impacts and opportunities for stigma intervention at the public/provider level and the patient level,” according to Darnall, who studies the effects of stigma on pain but was not involved with the current study.
The research appeared online ahead of print on June 11, 2022, in the Journal of Pain.
An unexplored area
After working for more than a decade at an interdisciplinary chronic pain treatment center, first author Debbie Bean, of Auckland University of Technology, noted that many of the patients there reported experiencing significant stigma because of their pain.
“Many people I worked with described feeling as though others didn’t believe their pain was real or didn’t take it seriously, which only makes their lives even more difficult,” she wrote in an email to MSC. “When we looked into the research on social stigma, we saw there is lots showing that people with mental health problems or conditions like human immunodeficiency virus [HIV] are stigmatized. But there is relatively little research regarding chronic pain.”
To fill that gap, Bean and postgraduate psychology student Amber Dryland pursued a mixed methods study combining quantitative strategies along with qualitative strategies that would capture study participants’ personal stories about their pain experience. The research team also wanted to overcome a hurdle that studies of pain stigma face.
“It’s so challenging to separate the effects of pain-related stigma from the effects of pain itself,” Bean wrote. “Pain can limit people with regards to activities and stigma can further limit people as they don’t want to experience judgment from others.”
The researchers recruited 215 adults with chronic pain, including migraine, to complete a variety of questionnaires in order to assess study subjects’ experience with pain-related issues like opioid use, mental health concerns, disability, and social support. They added open-ended questions about these topics to better understand the impact of stigma on day-to-day life. Subjects were mainly female and European, with an average age of 43 years.
Associations with stigma
The investigators discovered associations between a number of factors and stigma. Use of more opioids, having a mental health condition, and being unemployed predicted more stigma.
Contrary to the researchers’ original hypothesis, holding organic pain beliefs – viewing pain as a medical condition rather than as a psychological one – also predicted more stigma. The authors say this could be due to a number of reasons, such as people with pain feeling invalidated when exposed to information that pain has not only biological but also psychological and social aspects (the commonly accepted biopsychosocial model of pain).
Turning from the determinants of stigma to the effects of stigma, the group discovered that stigma predicted disability, depression, and social support: The more stigma, the more disability and depression, and the less social support there was. (Social support refers to how many people provide social support to people with pain, how much interest and concern people with pain receive from others, and how easy it is to get help).
Bean said that most of these results did not surprise her, but some of the qualitative responses were eye-opening.
“The main finding we hadn’t anticipated and measured with other questionnaires was the finding that people living with pain try to keep it a secret and conceal it from others in order to prevent social judgment or stigma. This came through very strongly in the qualitative component of the study. People also described feeling very isolated and alone with their pain, and this is an important area that we’d like to better understand and provide people with support.”
Another qualitative finding was that study participants said other people disbelieved their pain. And, interestingly, there was a wide range of stigma reported by participants, with some experiencing widespread stigma but others saying they felt no stigma.
Darnall said that the study is “right on point” with results from her own research on stigma and is excited to see the field moving toward characterizing stigma in greater detail. She also noted that to truly understand stigma, greater diversity is needed in study samples.
“The sample in this study is 91% female and 88% Caucasian/White,” she noted. “We conducted our own international survey study recently and our demographics were similar. We appreciate that the results derived from fairly homogenous samples may not generalize. Diverse patients likely experience layers of stigma that are not being captured.”
Implications for migraine
Bean believes the study has implications for people with migraine and headache disorders, and would like to do a follow-on study to learn more. Of the study participants, 33% indicated they live with pain in their head, with 6% pointing to headaches as their “worst pain.”
“There were a number of participants in this study who had migraine, and lots described stigma experiences in our open-ended questions,” she said. “Migraine, like other chronic pain conditions, is invisible, and people described being disbelieved or feeling that others attributed their limitations to work avoidance, so it’s likely that stigma is an issue for some migraine sufferers. That said, migraine, unlike other chronic pain conditions, is episodic – meaning the pain comes and goes – so it would be interesting to study stigma in this group specifically, in future studies.”
In the meantime, Bean and colleagues hope their results help drive the message that chronic pain is frequently misunderstood, and that a better understanding of this problem will assist treatment efforts. She would also like to see the findings spur the development of new interventions.
“Creating a culture that supports people to disclose their pain without fear of judgment is essential if we want to treat chronic pain,” according to Bean. “Our results also show that assisting people with pain needs to focus on more than just biomedical or individual psychological treatments. Treatment should also encompass a patient’s social network to encourage the people around the person living with pain to provide more support so they can be more actively engaged in life.”
Kayt Sukel is a freelance writer based outside Houston, Texas.
The determinants and effects of chronic pain stigma: A mixed methods study and the development of a model. Bean et al. J Pain. 2022 Jun 11;S1526-5900(22)00334-0. Online ahead of print.
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.
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