“She looks okay” – Why Stigma is the Most Disabling Feature of Chronic Pain

Author: Tahlia Baumann

Annie is 30 years old and lives with persistent pain. She uses a disability parking permit as it reduces the distance she walks to do her grocery shopping. When Annie parks in an accessibility bay, she is met with concerned looks from other shoppers. Sometimes, people approach her and tell her “You don’t look disabled, so you shouldn’t get to use that car park”.  Annie feels shameful, discouraged, and completely alone. She is less likely to return to the shopping centre and withdraws from her usual activities that keep her mentally and physically well. Annie’s story is the reality of thousands in Australia living with invisible conditions like persistent pain.

To most people, pain and how it is treated seems straightforward. We are taught that when we are in pain, we go to the doctor to get it fixed. We build our understandings of pain on common sense, where the amount of pain we feel must be directly related to the amount of damage to our body. Our automatic assumptions, normally based on our past experiences, form the foundation for how we make sense of situations that challenge our views of the world. As a psychologist who works with people living with persistent pain, a big part of my role is supporting people with these invisible conditions to manage the consequences of the automatic assumptions and judgments from other people about the legitimacy of their pain – not just from the public, but from friends, family, their workplaces, and even other health professionals.

Recently, 215 people shared their experiences of living with chronic pain in a large-scale study exploring the effects of chronic pain stigma¹. People with chronic pain reported that their pain was frequently disbelieved by others, and was attributed to drug seeking, laziness, or mental health concerns, which led to greater isolation and disability. Many also shared how stigma from others created self-stigma and feelings of worthlessness, increasing symptoms of depression and anxiety. People described how their social support had deteriorated due to cutting themselves off from friends, work, and concealing their pain from others to avoid stigma. The study also found that greater stigma was experienced by those who used more opioids, had a mental health condition, viewed their pain as organic, and were unemployed.

Annie was able to develop strategies to manage her responses to stigma and boost her self-esteem with support from her psychologist. She learned how to set appropriate boundaries with people who questioned the validity of her pain and began spending more time with people who were understanding and supportive. However, Annie’s story also shows the critical role that social factors play in the experience of chronic pain, and how making small, compassionate changes to the way we think about chronic illness can have a big impact on wellbeing. There is an old saying: “When you hear hooves, think horse, not zebra”. Sometimes in our quest for the easiest explanation, we forget about the possibility that things may not be what they seem. While maybe not our first thought, zebras are real too. Noticing, and then gently challenging some of our automatic reactions is the perfect place to start to create safer environments for people struggling with a condition that can’t be easily seen. If we carry with us this understanding, it can make a world of difference.

Axis offers a range of services to support people with persistent pain to improve their functioning and wellbeing and facilitate a successful return to work. For more information on Axis’s multidisciplinary approach to pain-management, visit https://helloaxis.com.au/ or email info@helloaxis.com.au.

 

¹ Bean, D. J., Dryland, A., Rashid, U., & Tuck, N. L. (2022). The Determinants and Effects of Chronic Pain Stigma: A Mixed Methods Study and the Development of a Model. The Journal of Pain, 00(00), 1–16. https://doi.org/10.1016/j.jpain.2022.05.006