1: How pain is communicated

How pain is communicated: questionnaires, scales and experiments

How can you ever accurately share the experience of pain? This episode looks at how we measure and record pain, featuring a reading from American author Eula Biss about the 0-10 pain scale used in medical settings and an interview with Korean-Australian artist Eugenie Lee about the stigma of pelvic pain and her latest work, Breakout, My Pelvic Sorcery, in which participants can experience the real sensations of pelvic pain via a “pain inducing machine”.

Credits

Producers: Georgia Mill, Michelle Macklem and Beth Atkinson-Quinton
Intro Theme: Michelle Macklem
Guests in this episode: Eula Biss and Eugenie Lee

Eula Biss is the author of four books, most recently Having and Being Had. Her book On Immunity was named one of the Ten Best Books of 2014 by the New York Times Book Review, and Notes from No Man’s Land won the National Book Critics Circle award for criticism in 2009. Her work has recently appeared in the Guardian, the Paris Review, Freeman’s, The Believer, and The New Yorker. — Eula Biss is the author of four books, most recently *Having and Being Had*. Her book *On Immunity* was named one of the *Ten Best Books* of 2014 by the *New York Times Book Review*, and *Notes from No Man’s Land* won the National Book Critics Circle award for criticism in 2009. Her work has recently appeared in the *Guardian*, the *Paris Review*, *Freeman’s*, *The Believer*, and *The New Yorker*.

Eugenie Lee is a Sydney-based, Korean-Australian interdisciplinary artist with a conceptual focus on her lived experience with persistent pain. Experimentation and collaboration with pain scientists and researchers, who investigate ways in which technologies can assist in pain research, have become an important conceptual underpinning for her interdisciplinary art practice which includes participatory performances using technologies, installations, sculptures and paintings.

The title for this series has been inspired by author Anne Boyer when she describes pain as ‘a fluorescent feeling’ in her book The Undying.

A Fluorescent Feeling is supported by the Victorian Government through Creative Victoria.

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Transcript (click to view)

Download a transcript of this episode here (Adobe PDF format).

Episode 1. How pain is communicated: questionnaires, scales and experiments

[Intro]

[Music: Low, humming-warm tones that pulse. Like wet sand – expanding and retracting underneath the pressure of feet.]

Hi I’m Georgia Mill, welcome to the first episode of A Fluorescent Feeling: an audio series about pain and our bodies – how we talk about them and live inside them.

Just a heads up, this podcast contains descriptions of the physical and mental manifestations of pain. Please listen with care.

A Fluorescent Feeling is created on the lands of the Wurundjeri and Boon Wurrung people of the Kulin Nation. We pay our respects to their elders—past and present—and acknowledge that first nations peoples have been communicating and sharing stories on these lands for thousands of years. It was, is, and always will be, Aboriginal land.

--MX start--

[Music: Synths fluttering, the tick tock of drums, lower bass]

There are many factors that increase the likelihood of developing chronic pain, including being female, getting older, genetic predispositions and environmental influences, such as socioeconomic disadvantage.

But there’s a lot we don’t know about chronic pain and a lot we don’t measure.

We say we know something like the back of our hand when we know it well because to know something is to look at it often. But what about to feel it often? There's something that renders pain unknowable because it is largely invisible, although that kind of negates the knowledge and sensations of the body. How can you articulate something without language? Perhaps through scans and tests? But this only works if those scans pick up what the body is trying to communicate.

I think about my pain as a line, because I visualise it running through my body as one, but pain can take on many forms.

This first episode is all about measuring and recording pain. You’ll hear audio about how we record and communicate our pain to others from author Eula Biss and artist Eugenie Lee.

--Music fade--

Here are some of the words people have used to describe their pain to me:

[Music: Bright and concerning waves of melody underneath. The type of sounds you’d expect to hear if you were floating through soft clouds]

--Music start--

Cramping
Burning
Sharp
Stabbing
Pressure
Tingling
Bubbles
Pins and needles
White gold

Here’s how you are asked to measure your pain at the hospital: “Can you rate your pain out of ten for me? With zero meaning you have no pain and ten being the worst pain imaginable.” As you can imagine this is often hard to do. Where’s the baseline? How do I know what the worst pain imaginable is? And what if I don’t know what no pain feels like?

--Music fade--

Eula Biss is an american author of four books, in 2005 she wrote an essay titled The Pain Scale about her own experience with chronic pain. Here she reads excerpts from that essay:

--The Pain Scale by Eula Biss--

0 – No Pain

I am sitting in the exam room of a hospital entertaining the idea that absolutely no pain is not possible.

If no pain is possible, then, another question—is no pain desirable? Does the absence of pain equal the absence of everything?

[Music: low shifting buzzing]

Some very complicated mathematical problems cannot be solved without the concept of zero. But zero makes some very simple problems impossible to solve. For example, the value of zero divided by zero is unknown.

I’m not a mathematician. I’m sitting in a hospital trying to measure my pain on a scale from zero to ten. For this purpose, I need a zero. A scale of any sort needs fixed points.

The deepest circle of Dante’s Inferno does not burn. It’s frozen. In his last glimpse of Hell, Dante looks back and sees Satan upside down through the ice.

At night, I ice my pain. My mind descends into a strange sinking calm. Any number multiplied by zero is zero. And so with ice and me. I am nullified. I wake up to melted ice and the warm throb of my pain returning.

[Music: ambient chords, shaky and bubbling underneath]

My father is a physician. He treats patients with cancer, who often suffer extreme pain. My father raised me to believe that most pain is minor. He was never impressed by my bleeding cuts or even my weeping sores. In retrospect, neither am I.

Every time I go to the doctor and every time I visit the physical therapist, I am asked to rate my pain on a scale from zero to ten. This practice of quantifying pain was introduced by the hospice movement in the 1970s, with the goal of providing better care for patients who didn’t respond to curative treatment.

My father once told me that an itch is just very mild pain. Both sensations simply signal, he told me, irritated or damaged tissue.

But a nasty itch, I observed, can be much more excruciating than a paper cut, which is also mild pain. Digging at an itch until it bleeds and is transformed into pure pain can bring a kind of relief.

Where does pain worth measuring begin? With poison ivy? With a hangnail? With a stubbed toe? A sore throat? A needle prick? A razor cut?

Hospice nurses are trained to identify five types of pain: physical, emotional, spiritual, social, and financial.

The pain of feeling, the pain of caring, the pain of doubting, the pain of parting, the pain of paying.

Overlooking the pain of longing, the pain of desire, the pain of sore muscles, which I find pleasurable.

The pain of learning, and the pain of reading. The pain of trying.

The pain of living.

A minor pain or a major pain?

There is a mathematical proof that zero equals one. Which, of course, it doesn’t.

[Music: twinkling and sharp tones]

Although the distance between one and two is finite, it contains infinite fractions. This could also be said of the distance between my mind and my body. My one and my two. My whole and its parts.

The sensations of my own body may be the only subject on which I am qualified to claim expertise. Sad and terrible, then, how little I know.

--Music fades out--

“How do you feel?” the doctor asks, and I can’t answer. Not accurately. “Does this hurt?” he asks. Again, I’m not sure. “Do you have more or less pain than the last time I saw you?” Hard to say. I begin to lie to protect my reputation. I try to act certain.

[Music: bright and crackly, gently working between the ears. Pleasant static sounds]

Left alone in the exam room I stare at the pain scale, a simple number line complicated by only two phrases. Under zero: “no pain.” Under ten: “the worst pain imaginable.”

The worst pain imaginable . . . Stabbed in the eye with a spoon? Whipped with nettles? Buried under an avalanche of sharp rocks? Impaled with hundreds of nails? Dragged over gravel behind a fast truck? Skinned alive?

Like the advanced math of my distant past, determining the intensity of my own pain is a blind calculation.

--Music fades out--

On my first attempt, I assigned the value of ten to a theoretical experience—burning alive. Then I tried to determine what percentage of the pain of burning alive I was feeling.

I chose thirty percent—three. Which seemed, at the time, quite substantial.

[Music: thumbing and bouncing bass, soaring bright tones]

Three. Mail remains unopened. Thoughts are rarely followed to their conclusions. Sitting still becomes unbearable after one hour. Nausea sets in. Grasping at the pain doesn’t bring relief. Quiet desperation descends.

“Three is nothing,” my father tells me now. “Three is go home and take two aspirin.”

It would be helpful, I tell him, if that could be noted on the scale.

The reality that my nerves alone feel my pain is terrifying. I hate the knowledge that I am isolated in this skin—alone with my pain and my own fallibility.

--Music fade--

Pain is a landscape with pockets of beauty and intensity.

[Music: bright and sharp tones]

There are dangerous fires that draw you in close and scold you. There are icy channels that penetrate the marrow of your bones. The sensations radiate from within you, making you bristle against the outside world: its surfaces and sounds are too harsh when they bump up against the coldness of your body. You feel like you are fragile and fierce at the same time – a deadly stalactite ready to drop and shatter. You feel agitated by those around you because they don’t understand this complexity. They don’t understand how restless and uncomfortable your body feels and they’d prefer it if you didn’t talk about it. They don’t want you to sit there complaining about the sensations within you, they don’t know the words to describe what you’re feeling and you can’t let them in.

--Music fade--

Eugenie Lee is a Korean-born, Sydney-based, interdisciplinary artist with a conceptual focus on her lived experience with persistent pain.

Her work is based on the bio-psycho-social model of pain – this looks at the interconnection between biology, psychology, and socio-environmental factors and examines how these aspects play a role in health, and disease, and human development. Basically, how all these things influence how we experience pain, and the world.

Eugenie: I live with persistent pelvic pain, along with other autoimmune diseases, and other comorbidity that came through the pelvic pain experience. So, my pelvic pain experience actually started when I began my period, so maybe around when I was 12, or 13 years old, and it gradually got worse, as I got older. And around when I started my uni and also before then, it became just so debilitating, that it was almost impossible for me to function as a normal person. And it was just so isolating.

And back then, a lot of clinicians didn't really know a lot of my condition either. It was such a lonely experience. And it almost helped me in a way, like almost like a therapeutic way for me to be able to express my pain experience through my paintings and drawings. And it was really helpful, because I found pain experience, so difficult to talk about through verbal language to other people and they were asking you, “So what's wrong with you?” and “Why are you experiencing all these things?” And “Why are you saying no to, you know, all the invitations and social events?” and all this and, “But you look perfectly fine?” And I just didn’t know how to answer that ...

Georgia: When we spoke earlier you mentioned a striking image, like a repetitive thought that you had about visualising your pain and not knowing if it was rational or irrational ...

Eugenie: During the worst moments of the pain experience in my life,I would just sit on my bed, and roll back and forth, and back and forth, and back and forth. And I actually kept thinking that if I could just go to the kitchen right now, and just cut open my stomach and pull out whatever is causing so much pain, surely, I would see some monster sitting in there causing all this pain, and I would see it: it's a thing, it's living in there.

I actually did a painting and I actually wanted to cut off my own stomach through my paintings. And hopefully that would make the pain go away. If I couldn't do it in real life. Maybe if I actually did it on painting. Surely that would be a catharsis experience, that would definitely put my pain away from me. To me, it's such a difficult painting for me to think about and even talking about it is very difficult. Even now, even though I've done that painting many years ago.

You live your life for so long without having much control over your life and over your body and over your emotion. It is such an important concept that control and its own recurring theme. Whenever you talk to other people who live with pain and getting some form of control back in any way. That brings some of the pain experience down for some reason.

[Music: bright and energetic tones]

Eugenie collaborates with pain scientists and researchers, who investigate the ways in which technologies assist in pain research.

[Music: drum beat]

She makes highly ambitious artwork that attempts to communicate the experience of pain to those who don’t live with it.

Her latest work is called Breakout, My Pelvic Sorcery

--Music fade--

Eugenie… talking about pelvic pain, in general sort of social setting is so taboo and stigmatised. So I wanted to make it funky, sexy, and you know, fun.I just wanted to break that stigma. Because automatically people think, "Oh, you got pelvic pain, what's wrong with your vagina?" Or "what's wrong with your penis?" But the pelvic region is so complex and surrounded by layers and layers and layers of muscle, organs and nerve endings. So I teamed up with pain researchers: Dr. Susan Evans she is a pelvic pain specialist, and she's a pelvic pain researcher and a founder of Pelvic Pain Foundation of Australia; and Emeritus Professor Roly Sussex, he is a linguist who specialises in pelvic pain expression from University of Queensland; and Dr. Claire Ashton James. And she is an empathy expert and clinical psychologist from The University of Sydney.

[Music: warm and slower tones]

These researchers sent out a survey specifically targeting women with pelvic pain – asking them, “what their pelvic pain feels like?”

Eugenie: And these women express their pain in a most beautiful and agonising, poignant way to describe their daily lives with this pelvic pain. And it was just really heartbreaking actually.

From here, Eugenie selected the most commonly used words to describe their pain and set about trying to replicate these sensations using a TENS machine with the help of mechatronics engineer, Pete de Jersey.

For those of you who aren’t familiar with a TENS machine it stands for Transcutaneous Electrical Nerve Stimulation and is a method of pain relief involving a mild electrical current that’s administered to the body via some sticky pads. You might have seen them used to treat joint pain, assist with labour pain or treat arthritis.

--Music fade out--

Eugenie: We've hacked it, and turned it into a pain inducing machine. And it actually gives us a really gentle, tingling sensation. And if you actually up the dosage a little bit, then it becomes quite an intense, like, muscle clamping kind of buzzy sort of experience.We've safely created these painful, discomforting experiences. And then after that, I sort of worked on this virtual reality component to create a little game ...

SFX: Breakout. Beeping sounds – like items at a checkout being scanned rapidly. They fluctuate in long and short bursts of high pitch beeps.

...The idea is, is from the,arcade game called Breakout. And basically, what you do is hit the ball against the wall and that's all. You just keep hitting the wall against a wall. It's so simple, and it bounces back and you keep hitting, you miss, it comes again ...

SFX: Breakout.

The idea is that a lot of women have expressed that pain itself they could somehow live with. But what they actually found really difficult is they found in was just really difficult to do day-to-day, everyday things: play with their children, be a good partner, or being able to work, or even just read newspaper, or just do simplest little thing becomes very difficult for them. So I wanted to focus on that idea. Because a lot of people don't understand when you live with pain, a lot of simple things can be such an Olympian, you know, gold-medal-standard effort. It's very, very difficult. And I wanted to bring that idea across to people who don't experience pain. And I also wanted to challenge, “Can you do it? If you experience something like this? Can you do something simple, as playing a ball?” Just having fun. “Can you even have fun?”

[Music: ambling, warm tones]

For the experiment you enter a private room where Eugenie attaches four sticky pads to your skin. They’re about half the size of your palm and attach very closely to your pelvic bones – two on the front lower than your belly button and then two behind them on the sacrum area.

CLIP: Dr Andrew Burrell “It felt sort of like nibbling on the surface of the skin -- I could push it to the side. But when it sort of felt like it was coming from inside, that’s when it became really quite distracting.”

Eugenie measures the safety threshold for each participant before commencing and monitors them throughout.

CLIP: Dr Andrew Burrell “It’s doing little bite-y things now instead of -- Ow! Ow! -- Now it’s doing big bitey things.”

You put on some virtual reality goggles and for around ten minutes try and hit a ball against a wall

CLIP: Christiane Fennell “I’ve had pelvic pain before in my life, of course, menstrual cramps and stuff. But I never had pain in the back pain before.”

All while experiencing the common sensations that people with persistent pelvic pain provided on the original survey.

CLIP: Christiane Fennell “So the back pain was new to me, and that felt far worse, like I didn’t really know what to do.”

--Music fade--

Georgia: I wanted to ask you, through doing these works about pain, do you think that your relationship with your own pain has changed or is it, has it remained the same?

Eugenie: Oh, it's very different now. I mean, you know, when I told you about that painting that I wanted to stab my own stomach and pull out what was in there, and you know, I mean, I understand now that was just completely irrational thought. And I also acknowledge that it would have definitely felt like a rational thing to do back then. And I completely acknowledge that.

[Music: warm, glowing tones humming along underneath. If early-summer days had a melody, these would be the sounds in it.]

Now I view pain as a friendly reminder, if I could say it in a very cautious way, because I understand now, by understanding neuroscience, that pain is there to protect you, from the perception of danger – whether it's real, or just a perceived – it doesn't really matter, your brain does not, does not differentiate real from perceived. And I also acknowledge that all pain is real. And it's all subjective and personal. It's your brain, there, just wanting to protect you as best way it can possibly do.

--Music fade--

[Outro]

[Music: bright and sharp tones, quick and ticking drums]

Thank you for listening to A Fluorescent Feeling. This podcast is produced by me, Georgia Mill, Michelle Macklem, and Bethany Atkinson-Quinton and the team at Broadwave.

You can download each episode wherever you get your podcasts. If you enjoyed this episode please subscribe, or write a review and share it with your friends.

This series isn't about fixing problems, it’s about telling stories and should not be used as a substitute for appropriate medical advice.

If anything in this podcast has raised issues for you, you can call Lifeline on 13 11 14 or Beyond Blue on 1300 22 4636. There is also a list of resources in the show notes.

Thanks so much to Eula Biss and Eugenie Lee for taking part in the first episode.

I’d also like to acknowledge that the title for this series has been inspired by author Anne Boyer when she describes Pain as a fluorescent feeling in her book The Undying.

Thanks for listening.

--Music fade--

Multiple voices: [SFX: Broadwave, Broadwave, Broadwave, Broadwave, Broadwave.]

Broadwave PodcastsAugust 24, 2021