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What's it feel like? Artist creates a 'pain-inducing belt' to raise awareness for chronic diseases

Artist Eugenie Lee's collaborative project aims to raise awareness for chronic pain diseases. Source: Eugenie Lee

Emerging artist Eugenie Lee provides an opportunity for people to experience direct pelvic pain by wearing a custom-built haptic belt, as part of a collaborative project that aims to raise awareness for chronic pain that many suffer through day-to-day.

The Korean-Australian tells SBS Korean that participants have reported feeling a strange discomfort in the pelvic region, which they had never felt before.

It's a feeling that Lee knows all too well. For the past 30 years, she's suffered with endometriosis and adenomyosis, both disorders of the endometrial tissue that lines the cavity of the uterus.

Her participatory installation performance, Breakout My Pelvic Sorcery , provides a platform for participants to grasp how difficult it is to perform simple activities whilst experiencing pelvic pain, by inviting them to immerse in a visually engaging virtual reality game.

The project is the result of Lee’s work with pain scientists, a mechatronic engineer and a virtual reality technician.

A participant taking part in the VR project.
A participant taking part in the VR project.

She explains how chronic pain is more complex than acute pain. 

“There is no medication or pharmaceutical intervention for people with chronic pain, not only with pelvic pain but generally with chronic pain because opioid drugs and a lot of pain killers in pharmacies are for acute pain,” she says. 

People with chronic pain, she says, often feel lonely and isolated due to the inability of others to understand the reasons causing their pain and the nature of it.

“We, a lot of times, look fine and there is no tissue damage that shows for other people to understand so it was very difficult for me for many years," Lee says. 

Her personal experiences around the difficulties in describing her persistent pain inspired her to use art as a means of communication. 

It was while she was enrolled in the Arts & Synapse residency program at the Australian Network of Art and Technology in 2014 that she began working with pain science experts Professor Lorimer Moseley from the University of South Australia and Professor James McAuley from Neuroscience Research Australia.

“Their research into understanding the role of our brain for pain studies and experimenting with the latest technologies had a huge influence on me both as an artist and as someone who has been desperately trying to make sense of my pain,” she says. 

During her research, she took note of the individual experiences of pain through interviewing people who have lived with certain conditions. She then combined her knowledge with the latest scientific research. 

Then she worked with a mechatronic engineer to convert some of their words into a tangible, felt experience by converting a therapeutic machine into a pain-inducing belt.

“Allowing themselves to undergo a chronic pain-like experience in the artwork like mine, the participants’ behaviours towards people living with pain can transform towards thoughtful consideration with self-reflection rather than hostility or disbelief,” she says. 

Lee says her project sets a stage for empathy and connection to those who never fully understood chronic pain, but it is also providing an opportunity for those living with pain to understand the importance of pain science for their own management.

What's it feel like?

Lee says some participants have described the pain from the haptic belt as "torturous", though having felt both, she believes the pain experienced by participants in the art is of moderate intensity and bearable compared to what she went through.

“It’s more like an uncomfortable experience, but the artwork itself never goes over the individual participant’s pain threshold, so it is not painful,” she says.

"The chronic pain is invisible, and it is very personal."

However, Lee believes we are all connected with the pain due to its biopsychosocial nature.   

“We experience and interpret our world through our social settings, so basically the way we interact with people, our family members or friends or colleagues at work, other people's response towards a person living with chronic pain can actually make the pain better or worse."

In addition, she affirms that no one is immune to chronic pain.

“Your pain can become chronic. Any of acute pain like simple stomach-ache, even a paper cut or maybe a broken ankle that can become chronic."

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