Stigma and Chronic Pain

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There is a huge amount of stigma attached to chronic pain. People with chronic pain have to deal with other people’s responses, on top of the physical and psychological impacts of the disease itself.

People with chronic pain often face a general lack of understanding and acceptance of the validity of their pain. This negative reaction to their chronic pain can come from the medical system, healthcare professionals, work colleagues, loved ones or even strangers they come into contact with.

People with chronic pain will often hide how much pain they are in because of the stigma towards invisible illnesses. This was cited in Josh Moran’s research on injustice and stigma below. When using public transport, for instance, people with chronic pain would often give up their seat or not sit down because of the stigma. There’s pressure to conform or fit in because other people think they look like a relatively healthy person and that they are overreacting.

ASpida: against stigma pain intervention approaches

ASpida is a research development programme run in collaboration with the School of Applied Psychology, UCC and Chronic Pain Ireland.

The scheme aspires to reduce stigma in individuals with chronic pain by developing an against-stigma, self-care programme to be delivered to local communities and integrated into Chronic Pain Ireland’s services.

“ASpida employs a unified behavior change approach, called Psychological flexibility for Chronic Pain and patient-centered participatory activities. The program attempts to stop stigma by teaching individuals with Chronic Pain several techniques on how to respond to stigma imposed by others or to cope with self-stigmatization, including unwelcome thoughts and emotions. ASpida prioritizes empowering individuals to engage in value-consistent activities even in the presence of pain and stigmatized experiences. It focuses on what individuals can personally do to tackle the effects of stigma, rather than intervene in the social context that feeds into stigma.”

. . .

The role of injustice in adjusting to chronic pain

Josh Moran, researcher and PhD student in Psychology at NUI Galway’s School of Psychology, shared the results of the research he has conducted examining chronic pain, stigma and injustice with members of Chronic Pain Ireland.

In his talk, Josh shared that there are parts of chronic pain that are made worse with the stigma of people outside of living with chronic pain. This stigma puts immense pressure on people who already have immense pressure to deal with.

I’ve talked to thousands of people with chronic pain. All of them have had some sort of experience of somebody lacking understanding of their chronic pain, having some kind of stigma of chronic pain, reacting negatively to chronic pain in some sort of way.”

– Josh Moran
People described being consistently questioned on the validity of their pain. Some felt immense pressure from friends and family to go to events, regardless of how much pain they were in. As a result, participants shared that they have “literally crawled” to family events in order to avoid being questioned about the validity of their pain and feeling further injustice. This was experienced across a range of social settings, including familial, society and work settings.

“The injustice within the healthcare profession is ridiculous, between waiting lists, GPS that are uninformed…I didn’t fully realise the injustice, until I saw a consultant and that consultant said to me ‘You have been ill advised by professionals.’”

– Research Participant

Acceptance and commitment therapy (ACT) intervention for pain-related injustice experiences

The psychological impact of persistent pain on a person can be immense. Furthermore, pain-related injustice experiences can also give rise to other pain-related outcomes such as psychological inflexibility. This can manifest as avoiding social interactions or non-committed action or disconnection to the present moment.

“And then I try and do them because they insist that I go and then the next day I literally can’t walk – literally cannot move – but you’re still expected to do everything.”

– Research Participant
Committed Actions is the ability to commit to doing things that give valuable direction to your life when faced with high levels of injustice. In other words, working on other things that bring you value to your life can support and reduce feelings of injustice and those negative pain outcomes.

. . .

Social isolation and chronic pain

Anyone with a chronic illness is at a much higher risk of being socially isolated and experiencing loneliness. Chronic pain inhibits a person’s ability to do daily activities and engage in exercise.
    • Social isolation: the absence of social interaction, support and community engagement
    • Loneliness: the individual’s personal sense of lacking connection and social interactions.

“While physical activity enhances health and helps to prevent illnesses; such as diabetes, heart disease, cancer and dementia, people with chronic pain are significantly less active then their pain-free counterparts. So they miss out on the health enhancing and social benefits of exercise.”

– Prof Karen McCreesh, from one of our Pain Talks Tackling Social Isolation in Chronic Pain

Why do people with chronic pain experience more loneliness?

    • Stigma or a lack of understanding from friends/family/society
    • Loss of job/career reduces opportunities to socialize
    • Unpredictability of pain and fatigue – not knowing how you will feel day-to-day
    • Balancing the desire to be active with the subsequent impact on pain 
    • Financial issues, lack of transport
    • Low mood and mental health issues

Reducing social isolation

When you have chronic pain, it’s important to plan activities that match your level of function as you make being social a priority. By joining a community-based support group like Chronic Pain Ireland you can help reduce the burden of social isolation.

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