3: How pain is felt

How pain is felt: identity, intimacy and self-expression

Content warning: This episode contains medically and sexually explicit content and may not be appropriate for young audiences. Listen with care.

How important is it for us to be ourselves in clinical settings? And how closely is pain linked to our sexuality? In this final episode, we talk to Sean who has Chronic Fatigue Syndrome and Fibromyalgia about navigating the medical system at a young age; hear from disabled writer Sonya Huber about the connection between chronic pain and intimacy; and listen to an audio work about pain and sexuality from artist Nunzie Madden.

Credits

Producers: Georgia Mill, Michelle Macklem and Beth Atkinson-Quinton
Intro Theme: Michelle Macklem
Guests in this episode: Sean Galway, Sonya Huber and Nunzie Madden

Sean Galway is a 24-year-old digital artist, creative & concept. Living life in technicolour whilst battling chronic fatigue syndrome, fibromyalgia, anxiety, ADHD and more.

Sonya Huber is a disabled writer with rheumatoid disease and a longtime activist who teaches at Fairfield University in Connecticut in the US. She is the author of five books.

Nunzie Madden is a Slovenian–Australian who is a nonbinary transgender artist and musician as well as a disability pensioner.

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.

Get in touch

We love hearing from our listeners. Stay in touch across Twitter, Instagram and Facebook at @broadwavepods.

Transcript (click to view)

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

Episode 3. How pain is felt: identity, intimacy and self-expression

[Intro]

[Music: Low humming warm tones. Pulsating slowly like they are emerging from beneath the ground.]

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

Just a quick note, this episode contains medically and sexually explicit content. Listener discretion is advised

A Fluorescent Feeling is created on the lands of the Wurundjeri and Boon Wurrung people of the Kulin Nation. We respect the importance of First Nations peoples’ cultural practices and rich storytelling traditions and pay our respects to their elders—past and present. We acknowledge that fear and submission have been, and still are, used as tools of colonial oppression on these lands. It was, is, and always will be, Aboriginal land.

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

This episode explores intimacy, pain and self-expression.

---

Sean: I've been through the medical system my entire life. And I think it's something that a lot of queer people do tend to deal with whether that is physical or mental.

I feel like a lot of queer people have suffered to some extent. So I think it's really important to have the conversations about it, and kind of, I guess, understand whether there is a correlation between the two, or whether it's just some kind of strange coincidence.

Georgia: Sean’s 24 and lives in Melbourne he has Chronic Fatigue Syndrome or ME and Fibromyalgia. He’s also a digital designer and actually designed the logo for the series.

-- Music fade --

Sean: So I was in primary school, I was in grade six, I used to be really, really active. I used to play state-level soccer, regional netball, I did tennis, swimming – every sport, you could imagine, I was doing it pretty much every night of the week, and I started to get pain in my knees. And cos I was – would have been about 13 at the time, I went to see a physio and they’re like, “Oh no, It's just growing pains, it's growing pains.” That I just never grew out of it.

And then it kind of got to a point where I was like, “Okay, hang on something's got to give.”

And if I don't give up the sport, it's going to be my body. So had to eventually kind of roll back, doing all that kind of stuff, I guess things kind of got real bad around, I guess around year 8, I would say when my pain really kind of became quite overwhelming. And that was when we kind of realised maybe it isn't exactly just growing pains, it's probably something a little bit worse.

Georgia: Yeah and what was that experience? Like just navigating that experience so young? What kind of effect did that have on you?

Sean: It was pretty, pretty intense. Just because I didn't really know what to do with the information, we'd go to all these specialists, and all the tests would come back negative. But like, I still knew there was something wrong, but I didn't know what it was. I didn't know how to really communicate that just yet, I didn't really have a full understanding of myself or my emotions to verbalise them.

Essentially, Chronic Fatigue [Syndrome] is one of those ones, where it's like, “Oh, we've ruled out everything else. So it's got to be that.” It's kind of like a process of elimination. And they were very reluctant to, you know, label it just because it's also like, and I specifically told this, that Chronic Fatigue [Syndrome] is only found in middle aged white women. So for me to be the complete opposite to be like a little POC boy, they were really, really reluctant to do that.

So, yeah, it took about two years, about two years to get, two-three years to get an official diagnosis. But it's still kind of going through it 9-10 years later, because I'm still kind of going for additional tests and kind of going through a different element of diagnosis at the moment.

Georgia: You have quite an individual approach to your pain, likeyou're quite extroverted you do a lot of activities. And that's a really quite unique, I suppose response with the people that I've spoken to, and a lot of, for a lot of people, it doesn't really work.

Sean: A real big element of it was FOMO. Like I would just refuse, refuse to miss out on things. And at the start, it was a little bit toxic in the way of like, I'll push through, and I'll suffer later. And I know I will but it’ll be worth it, and then eventually, I kind of learned how to do that successfully and sustainably like I kind of figured out, “Hang on, like, maybe if I do this, I can do this.” Or, like, kind of, like, the trade offs with it.

A really big one for me was maybe going back like four or five years ago, I did like a pain management rehab at the Barbara Walker Center in St. Vincent's. So that was like a three-week intensive, five days a week situation where we essentially, like I used to be on some really heavy medication that's not prescribed anymore and that rehab, essentially, was to get you off any medication of dependence, because I'd been on that medication for maybe two years. It just was not going well at all. So through that, like, I've been able to get off the medication. And we kind of learned all these strategies around pacing, and bringing it down to I guess, rudimental elements of how long can you sit in one spot without having to adjust? Or how long can you stand up without having to shift your weight. And we had like little timers and throughout this whole day of rehab, every time you would feel that you, you know, there was a little pinch in your back or something, you'd have to shift your weight in your chair, you'd restart the timer, and keep an eye on how often you were doing that. And then you'd set little goals, and then you'd be like, “Oh, okay, can I sit for 10 seconds without moving?” And then, “Can I sit for 20?” Like, you'd kind of keep pushing the goalposts. And I guess that's kind of how I learnt that element of it. So I would continue to do that. And I kind of integrated that into the rest of my life.

[Music: nervous, flittery tones]

Georgia: I think when we last spoke, you mentioned that you like, even though you're ready to undertake the education around pain and attend the pain center, you weren’t, and correct me if I've got any of this wrong, but you said that, like you weren't fully comfortable in that space still in that, like you weren't fully out. And like your pain, I suppose journey has changed, the more you've kind of accepted yourself and feel more comfortable within yourself, I was wondering if you could speak a little bit about that.

-- Music fade --

Sean: When I kind of did that I wasn't totally out. I was kind of still figuring out who I was, and what I was comfortable with. To then have something else that is usually, oh back then, like still kind of had stigma to it. I wasn't ready–like I'm already having mental health issues. I'm already having all of this pain to then have another label on top of that. I just wasn't ready to kind of process that just yet.

Georgia: yeah, and I think too, like you don't want to ever seem like your sexuality is a negative thing too. So there’s a kind of protection with it like, you like, “Why would that affect this health outcome because there's nothing wrong with who I am. And there's nothing wrong with my sexuality.” But like I've spoken to quite a lot of people who haven't necessarily had negative experiences navigating the healthcare system because of their sexuality, but who carry with them this fear of having one and I know it's something that resonates with me. And something I'm kind of always on guard against whether I proactively, like say it at the start of an appointment, or make it really clear that I'm in a same-sex relationship. And especially now being pregnant, I'm acutely aware of that, when I go in any space. Is that fear, something that you relate to at all, that kind of guarding, wanting to protect yourself in those spaces?

Sean: Yeah, totally um, depending on, I guess, the–like the healthcare professional that you see there is almost like a: pause, mental note kind of thing. I feel like there almost was an element of, I didn't kind of want to bring it up, I didn't really feel like it was a necessary thing in terms of my health. I didn't really think the two overlapped or they should overlap at all. But yeah, maybe in hindsight, that could have helped in terms of understanding like the holistic picture a little bit more.

I think representation was super, super important. I feel like every specialist I saw was a middle-aged-white man. They understand the issue, but not the person. I remember even when I was like, looking through, you know, Google, it was always like, yep, middle-aged-white women. Or even like, the imagery used, like cartoons and stuff in like, the pamphlets and stuff always represented. Just white cis people, like there was no variation. And there didn't need to be color representation. Like it's a cartoon, you can make them blue and green. There was no representation where they could have easily done something different.

[Music: bright and friendly melody]

Georgia: I wonder if you could talk a little bit about your fashion and how you dress, because it's, you know, so affirming and such a form of creative self expression. Yeah, just how it makes you feel more generally and that as a part of your identity.

Sean: Yeah, totally. It's always been something that's, you know, absorbed every part of my life. And I just think it's such a good way of painting a bigger picture without having to say anything. Like when you meet someone you can, or even when you're walking down the street, you can just tell so much about someone by the way that they're dressed. And even someone who says they don't care about how they dress still chose what outfit to put on in the morning.

-- Music fade --

I think especially someone, like, growing up when you know I was little being like, you know being brown and being like being queer. I didn't have anyone to look up to. Like there's no one in the media like the three options were Apu from the Simpsons, Raj from the Big Bang Theory, and then I can’t remember her character name, but Priyanka Chopra who was in the show Quantico who essentially played a terrorist. So my three options were terrorist, IT and convenience store worker. Like those were the only three, brown POC, people in mainstream media. So I kind of didn't really have anywhere to kind of learn from or explore what my own taste was.

[Music: sombre and slower tones]

I remember, like, when I was young, I would look out the window. And I'd literally just be looking for like, anyone or anything to kind of be like, “Oh, I kind of look like that guy,” or “I don't look like that.” So I'm kind of just really conscious about how I can be perceived from the outside. Not, not in like a vain kind of way to be like, “I need to make sure I look good all the time.” Cos like, I know that like, my taste isn't for everyone. But that's why I kind of love it. So I know that as long as I'm happy wearing what I'm wearing, then it honestly–like it doesn't really matter. Because like, if I'm being, like, unapologetic about it, then that's what really matters to me.

-- Music fade out --

---

Georgia: Sonya Huber is a disabled writer with rheumatoid disease and a longtime activist who teaches at Fairfield University in Connecticut in the US. She is the author of five books.

And when I read her book, Pain Woman Takes Your Keys and Other Stories From a Nervous System I related a lot to her exhaustion and frustration around intimacy and in particular to her issues with her hips.

Sonya: “My husband and I had enjoyed a year and a half of wild and crazy dating sex before I got sick with rheumatoid arthritis. Suddenly issues of endurance, certain positions, and even whether I could have sex on a certain day were all completely unreliable and nonnegotiable. I had taken my hips completely for granted. On days when I couldn’t move them, I turned away from him in tears. Then we had to do something even more awkward than get naked and have sex. We had to talk about sex. Often. He was fine with it, but for me— feminist, writer, word person— it was agony.”[Excerpt from Pain Woman Takes Your Keys and Other Stories From a Nervous System]

[Music: thoughtful and gentle melody]

We take so much of what our bodies do for granted that when they let us down we often feel betrayed. Like we’ve lost something. Instead of appreciating what they actually can do we feel like our value have been subtracted.

Chronic pain and intimacy are interconnected, but not talked about enough. For many people their experiences of their own sexulity changes. I wrote to Sonya and asked her about intimacy and chronic pain.

Sonya: “My sexuality is changed in ways that give me more pleasure as the result of chronic pain, because my body and my relationship to the world has changed. I think this also really connects to Audre Lorde's sense of the erotic, that people with chronic pain have exquisitely tuned nervous systems. We feel the world differently than other people, and that changes our experience of pleasure as well, and it sometimes I think can force us to remap pleasure for ourselves, like grow new routes for finding pleasure when old ones are cut off. I think I myself want to think more about how people in chronic pain are sexy and sexual in ways that are specific to our kind.”

-- Music fade --

---

Georgia: The following audio work was created specifically for this series by Slovenian–Australian artist Nunzie Madden who is a nonbinary transgender person experiencing chronic pain.

The work Nunzie has produced is called Release Me and features an interview with an anonymous, disabled friend of Nunzie's. They discuss their relationship to pain and sexuality, while a recording of a recent MRI and samples of the 2008 song Release Me by Agnes play in the background.

The following recording contains explicit sexual references as well as reference to physical trauma and medical procedures, please listen with caution.

-- RELEASE ME --

Anon: When I was maybe ten years old was when I experienced like the most extreme pain of my life. Like lying on the bed, in the kind of pain that made me, like, hallucinate and dissociate. Having the epidural, like, I was physically immobilised which I’ve sort of formed this association to, like, restraints, like because of the pins that were in my body and the epidural, I was really restrained to my hospital bed, and then I had this dream about that time that I was, like, handcuffed to my bed in, like, a bondage style situation and I kind of feel, like, that experience of being in your bed at night, not knowing what to do with the pain. For me, like, position is really important. Like, the only way to alleviate my pain is to lie on my back with my limbs, like, straight and flat, but then, by putting myself in that physical position, it’s impossible to separate it from this association or this dream of being in a bondage-style restraint.

Nunzie: And like they restrain you, and then what? Do you just lay there? Like, what happens next?Anon: Yeah, like, immobolised by pain and then it gets confusing as to whether the pain itself that’s erotic or, I think it’s really confusing because I’m like terrified of the pain so how could it be associated with something that I’m supposed to want?

Nunzie: Is there a possibility that there’s, um, that the submission aspect of it interests you because I guess in those situations there’s a chance that all you could really do is just submit to, like, having been restrained?Anon: Totally. And I think that’s what I’ve, that’s how I’ve like dealt with pain, is to just submit to it. Which is why I don’t really often use pain relief, like I'm more likely to totally submit to it.Nunzie: Do you blame anyone? Or, do you feel, do you feel like, pain just exists?Anon: I think pain just exists, but my pain is too much for men, whereas I feel like other queer people, trans people, will have more capacity to understand a body that’s challenging. I mean, obviously, I don’t know a lot about this, in like, a formal sense, that thinking about bondage or thinking about kink, like, in the context of disability and queerness, that’s not so terrifying. Like it’s not, so monstrous, or like. I’m scared of like, the idea that I have of like, a kink community, or like, of it being, some like, some like quirky thing, without it being understood, within the context of, or at least my context of what has like brought me to think about those things.Nunzie: Do you think it’s possible to share those feelings or experiences with other people or do you feel that it’s something that ultimately you can only really share yourself?

Anon: I guess I’m telling you about it.[SFX: MRI Machine buzzes]

-- RELEASE ME ends --

Georgia: I was wondering if you could kind of unpack the layers in the work, especially the audio layers that you put in and why you chose each one of them.

Nunzie: One of the audio layers is from a phone that I put in a drawer. So it's the audio from the drawer that they make you put your personal items in. And you can just hear the MRI kind of in the background. Then I got a free audio clip of the exact MRI pattern that I had, specifically for my head. I guess the way that I thought about it is when you're sort of lying there getting your MRI, and you’re sort of, kind of, in this weird subconscious space. And like, maybe like you're hearing these songs over and over again, and they’re mixing with the audio of the MRI and you're kind of out of your body.

The Release Me sound is something that I think about a lot, it's sort of a dysphoria anthem. The chorus specifically is, the lyrics, I think about a lot. "Release me, release my body. So I don't have to, I know it's wrong." Those are the sort of lyrics that I really find really moving and really sad. And I guess, like, speaks to the way I feel about pain. But also, I guess, the way I feel about like, like maybe being in a female body, especially when that's associated with like, the pain that I feel.

And then there's the interview that I have with my anonymous friend. It's something that we talk about often, we both have experiences of being in hospital and going through invasive medical tests, and also feeling a loss of agency and a loss of control. And I guess, like, sort of, experiencing that intersection with gender and sexuality.

AndI asked them to be involved, because I feel like the way they think about, like, extreme pain is really something that I relate to. And there's also like, a sense of us sharing that together or like, communicating with each other, and like, trying to find the words for it. And sometimes, like, even failing at that is like a really interesting and like, beautiful thing to me that like, two people who are in pain and who are queer, can like come together and talk about the ways that we can share that but also like, it's almost beyond words or like beyond communication.

This is kind of difficult to talk about. But I had a test where they had to put a camera up my urethra and I freaked out and, like, I was screaming and crying, and they had to hold me down. And my mum and nana were there. And they were asked to leave. And so the only person who was allowed to stay with me was, like, this woman from my family's church. And I think that experience of, like, being restrained and, like, the loss of autonomy, and control, and power over my body is something that really stayed with me forever. But unlike my friend in the way they describe a similar experience in the track. It's not something that's an erotic experience for me.

Although, like, I guess, like when thinking about desire, it's like, I desire like, to be able to, like, speak for myself and, like, have autonomy over my body. But that's, that's not necessarily erotic.

Georgia: It was really interesting to hear your friend say, “My pain is too much for men.” And I just want to get your understanding of that and what you thought.

Nunzie: I think what we meant by that is not that men can’t experience pain, because I really want to emphasise that like, this isn't a male versus female type of experience. And this has nothing to do with like, the way that different bodies can experience pain or it's. It has nothing to do with biological essentialism, or, or anything like that, I guess, like, what, what my friend was sort of touching on is that the patriarchy really limits the way that you're able to communicate pain in such a way that bodies that are othered by the patriarchy don't have ways for their pain to be understood. And I talk a lot to some friends who are disabled and, and men, and I think they've said similar things to me where, when they're chronically ill or in pain, that's something that somehow is seen to undermine their masculinity or their kind of identity as a man, which is, like, I think a really tragic thing for men, but also for for people who aren't men.

[Music: ticking, tinkling sounds]

Georgia: I've been chatting to a range of people. And I think that, um, like, we live in this space, where pain has kind of been explained by the bodies that it exists within, if those bodies are within a certain category. There’s this binary, this is binary, between like, men's pain and then other pain. So this, like Androcentrism, so, like, masculine and male values are valued more in medicine, which I think kind of does a disservice to everybody, including people that identify as male. And I just wanted to ask you, if you, if that resonates with you, and you think that, you know, how we present affects the treatment options that are available to us and the clinical space? If it, kind of, changes the mood within the clinical space at all?

Nunzie: This is a tricky question. I think that it's incredibly difficult to have pain listened to if it's ambiguous. Especially reproductive pain, if it's not associated necessarily with reproductive issues. So for example, if I was a cisgendered woman who wanted to have a child, I imagine that it would be a lot easier for me to undergo an assessment for endometriosis and PCOS and I imagined it would be a lot easier for that to be treated, because I think a lot of clinics and surgeons will take that sort of condition seriously, if you're looking to have children, or if you're in a heterosexual kind of relationship where, I guess, your rights as a woman would be, like, more straightforward, I guess. And that's not what happened for me. Because I don't necessarily identify as a woman. I think that they thought perhaps it was more coming from a sense of dysphoria about my body, or just not wanting to have, like, a uterus, or I guess, maybe feeling distressed about the way my body was.

I remember one specific instance where I was in such severe pain that I went to the hospital and waited a really long time at the hospital. And when I finally got to see a doctor, I was like, in excruciating pain. The doctor gave me a referral for a psychiatrist, which I think is just really outrageous. Because it wasn't a psychiatric condition that I was suffering. It was pretty simple on my end, I was in pain, I wanted pain relief, I wanted tests done, and had the tests been done sooner, I would have known that actually, there was, like, pretty significant things going on in my body. But I think that that's not an abnormal experience in the trans community. I think a lot of people are misdiagnosed. And I think, like, for trans women, it's also significantly worse because I imagine that they wouldn't even be allowed the space for their bodies to be like respectfully, looked at and, like, I know a lot of, gynecological clinics and stuff just don't even see trans women. So yeah, I think it's, it's really complicated.

AndI do know that trans women or people on estrogen, synthetic estrogen can experience periods. And can experience, like, pain associated with periods. And I don't think that's taken seriously, at all. And I guess people say, “That's not a real period.” But because, like, maybe that's not like, bleeding or anything like that. But I think that there's no real boundary between, between what's real and what's not real, when it's your body sending you the signals.

Yeah, we have to have really serious conversations about pain. That's not straightforward. And not so biologically essentialised.

[Music: swirling tones]

Georgia: For many queer people, there's this sense of like, reclaiming space, reclaiming the word queer and things like that. And I'm just wondering, like, is there a way to reclaim like these patriarchal heteronormative clinical spaces? From queer perspectives at all?

Nunzie: I still don't know if I can think about a way to kind of redeem or like reclaim those sorts of experiences. I find them, like, profoundly disempowering. And the lack of autonomy, like, really distressing. But maybe in the future, we'll have like more language to talk about that.

Yeah. I think that pain wants to be, like, seen, or heard, or communicated, or understood, and I don't think that the medical field knows how to do that yet.

-- 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.

Thank you to Sean, Sonya and Nunzie for taking part in this episode.

Until next time, keep sharing your experiences of fluorescent feelings.

--Music fade--

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

Broadwave PodcastsSeptember 7, 2021