These are the visuals that participants see when they don the VR headset in Seeing is Believing.(Supplied: Andrew Burrell)
Eugenie Lee has strapped a thick, strange-looking belt, a kind of torture device, to gynaecologist and endocrinologist Dr Natasha Andreadis.
The custom-built haptic device gives the wearer pelvic pain-like sensations, and at first, Dr Andreadis's descriptions of the experience are fairly innocuous: "I'm feeling like my organs, woah, are really getting a deep massage."
But once Lee ratchets up the intensity level, Dr Andreadis says "it's like someone's punching you and they've got spikes on their knuckles".
Dr Andreadis then starts swearing and is lost for words for a moment, before asking: "Do people have to go through this every month? ... [It feels like] ripping, tearing, crazy sharp."
YOUTUBE Dr Natasha Andreadis trying Breakout My Pelvic Sorcery
Lee is a Korean-Australian interdisciplinary artist, and this work — titled Breakout My Pelvic Sorcery — is her latest effort to combine installation art, scientific research and cutting-edge technology to give participants an insight into chronic pain.
As she told Namila Benson and guest co-host Carly Findlay on The Art Show: "The quick and dirty summary of what I do as an artist is that I give pain to people for a living."
A 'creative intervention'
"I feel like there's something horrendous; some alien thing just living inside me, chewing and gnawing away, and sometimes it feels like there's a big lump of barbed wire just rolling and scraping against the organs and tearing whatever it touches," she says.
Lee also describes pain that's pulsing, shooting and stabbing.
"I was so ashamed of my experience and my thoughts because I couldn't explain it ... that sense of shame is just so inherent to the experience of pain," says Lee.(Supplied: Eugenie Lee)
According to national peak body Pain Australia, 3.37 million Australians were living with chronic pain in 2020 — and that number is forecast to rise to 5.23 million people by 2050.
"[But] hardly any of our experiences are acknowledged," says Lee.
"It's because it is invisible ... I'm not saying that my invisible experiences are any harder than people living with a visible disability, but it comes with its own difficulties."
Lee has spent almost two decades trying to make sense of her experience through paintings and photography.
But her life and artistic career took a significant turn in 2014, when she undertook residencies (through Accessible Arts Australia and the Synapse Residency) that introduced her to neuroscientists who specialised in pain research.
"[Over a] two year period, they sat with me one-on-one and gave me a crash course in the neuroscience of pain," says Lee.
She subsequently developed working relationships with other pain researchers and physicians, as well as a linguist with a special interest in pain expression.
"Within that scientific bubble, there was a whole lot of information that ... [helped me] manage my pain so much better than before," she says.
"The research into the neuroscience of pain in Australia is one of the most advanced in the world. But most of us don't have access to this important knowledge.
"So my artwork is a creative intervention ... bringing this important, latest scientific knowledge and combining it together with narratives of lived experience, not only from myself, but from other people who live with pain."
'Seeing is believing'
Lee's first art-tech hybrid was Seeing Is Believing (2016-2019), a combination of performance and installation that gave participants the illusion of experiencing the symptoms of a neuropathic disease called Complex Regional Pain Syndrome.
In the first stage, Lee (taking on the role of physician) sits down with the participant (playing a patient) and talks to them about the neuroscience of pain, while sussing out the participant's anxiety levels and attitudes towards pain.
In the final stage, participants step into an anechoic chamber and don a haptic glove which gives them gentle stimulation on one hand, while wearing a Virtual Reality headset that makes it appear like that hand is swelling up.
Lee says the combined effect of different elements in Seeing is Believing is that participants feel like their hand is swelling up.(Supplied: Silversalt Photography)
There are three settings for the haptic device, and Lee says even the most intense setting is fairly mild.
"[But] my intense performative interaction with them will intensify their experience. So for instance, I say, 'When you experience pain, next time, you will feel like this'. So it's a power of suggestion."
Lee is tapping into the nocebo effect (as opposed to the placebo effect) and she says this, combined with the haptic glove and the VR, gives almost all participants "pain-like symptoms".
"We manipulate their experience by literally giving them discomfort, and then the rest is done by their own brain ... and the brain has to deal with the sensory overload, which is what many people with persistent pain experience every day," says the artist.
Lee lives with endometriosis and adenomyosis and has experienced pelvic pain for nearly three decades.(Supplied: Anna Kucera)
Around 500 people have participated in Seeing is Believing, first at UNSW Galleries in Sydney, and then at other galleries and museums around Australia.
Lee was worried no one would be interested in experiencing pain — but sessions booked out, with many participants saying they were interested in trying to understand the experiences of loved ones living with pain.
'Breakout my Pelvic Sorcery'
"Pelvic pain is one of the least popular subjects even within pain research ... [and] there's so much stigma around pelvic pain," Lee says.
She attributes this to the fact that the condition mainly impacts women.
The haptic device in her artwork Breakout My Pelvic Sorcery, which is still in development, was made with the help of University of Technology Sydney mechatronic engineer Peter De Jersey.
"It's actually designed for therapeutic purposes ... but he hacked it for me and then we sort of refigured this machine into a pain-invoking machine," Lee says.
Lee says the team tested the device on themselves first, to ensure the pain was "acceptable"; they also test each participant's pain threshold before beginning.(Supplied: John A Douglas)
Breakout My Pelvic Sorcery gives the participant sensations described as "pulsing, stabbing and cattle-prodding pain" — matching the words pelvic pain patients used to describe their symptoms in the scientific survey The Language of Pelvic Pain.
Lee says that in her interviews with pelvic pain patients, they often mentioned how others failed to understand how difficult it is to do even simple tasks, when you're experiencing pain.
To explore this, participants play a VR version of the arcade game Breakout, a simple ball-hitting game, while wearing the haptic belt.
When Lee premiered Breakout my Pelvic Sorcery at the Big Anxiety Festival in 2019, participants only lasted two to three minutes.
She says many participants told her afterwards, "I didn't realise [how hard it was], now I know."
Lee (pictured, with VR headset and haptic belt from Breakout My Pelvic Sorcery) is an ambassador for the Pelvic Pain Foundation of Australia.(Supplied: Eugenie Lee)
While mounting a one-on-one experiential work like Breakout My Pelvic Sorcery has been impossible during COVID-19, Lee plans to present the work at a global pain conference in Amsterdam in 2021.
Like many people from the disability community, Lee describes a silver-lining to 2020, with both her work and the arts generally moving online.
"I don't want it to go back to normal because it's been really wonderful, in a way," she says.
'Changing the culture of pain'
After trying Breakout My Pelvic Sorcery, Dr Andreadis, who regularly treats women with pelvic and period pain, said to Lee: "Take this to med schools, strap every doctor and nurse [to it because] it'll make us more empathetic in terms of managing our patients."
But Lee says she's cautious about using the word "empathy", preferring to frame her work around social justice.
"Most people think that they understand what pain is. But persistent pain is a different experience to the type of acute pain that a lot of people are familiar with; it's just so much more complex, and it can have a devastating effect on people," she says.
Lee was among a group of female artists with disabilities who did a residency at Bundanon in NSW this year.(ABC News: Mary Lloyd)
Last year, Lee was hoping to apply for an artist residency in Melbourne but couldn't write a grant application because of her pain.
The alternative option provided by the scheme was also not viable.
"I explained the situation again, and their response was just simple disbelief, suggesting that maybe I might be asking for special treatment or maybe I was a liar," she says.
"I was going through so much pain but that experience itself made my pain even worse ... that lack of understanding, to me, is an act of cruelty."
Those psychological and social components of pain (e.g. anxiety, fear, anticipation and isolation) are something she tries to capture in her work in an attempt to force people "to rethink their own preconceived beliefs and actions towards people living with long-term pain".
"I aim to contribute towards changing this culture of misunderstanding … [that] comes from people who generally don't live with pain," says Lee.(Supplied: Anna Kucera)
Lee's works might sound daunting, but she says in the conversations that she has with participants at the end of Seeing is Believing, many ask detailed follow-up questions and speak passionately of the experience.
She's hoping people take what they've experienced and share it with others.
"I'm almost like this queen bee and I'm creating these little worker bees [the participants] ... they are all doing their own bit to spread the knowledge and change the culture of pain."