2: How pain is received

How pain is received: gaslighting and ‘not a good girl’

In this episode, we’re focussing on gaslighting and patronising behaviour as well as the importance of representation when it comes to chronic pain. You’ll hear from London-based filmmaker and video journalist Jameisha Prescod who is the creator and founder of ‘You Look Okay to Me’ – an online space for chronic illness; and listen to an edited excerpt of I’m Not a Good Girl by Melbourne-based artist Sam Petersen.

Credits

Producers: Georgia Mill, Michelle Macklem and Beth Atkinson-Quinton
Intro Theme: Michelle Macklem
Guests in this episode: Jameisha Prescod and Sam Petersen

Jameisha Prescod is a London-based filmmaker and video journalist. She is the founder and digital creator of the platform You Look Okay To Me – an online space for chronic illness. The platform explores how art, culture and society influence the way an illness is experienced.

Sam Petersen is a Melbourne-based artist, poet, and writer who is interested in what can be done with one’s identity and the space around it. Sam’s work often focuses on her disability and sexuality in relation to access, and the lack of it – to pla… — Sam Petersen is a Melbourne-based artist, poet, and writer who is interested in what can be done with one’s identity and the space around it. Sam’s work often focuses on her disability and sexuality in relation to access, and the lack of it – to places, people’s minds and opportunities.

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 2. How pain is received: a good girl and gaslighting

[Intro]

[Music: Warm music gently beings in the right side, then drifts into the left side]

Hi, I’m Georgia Mill, welcome to the second 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 physical and mental 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 the gaslighting, colonial violence and pain that has existed and continues to exist on these lands. It was, is, and always will be, Aboriginal land.

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[Music: hesitant, sketchy tones fluttering underneath]

I trust my pain more than I trust my memory. I think I remember where I was when I first felt it, but I’m not entirely sure. What I am sure of is the sensation of it. The memory of pain lives in my limbs and my mind, it tastes like crying and hunger, it’s sharp like a bee sting and then dull at the same time. It reeks of selfishness and gluttony and the kid who never learnt to share their toys. It’s stoicism and boredom. It’s eating all your meals in bed even though you know the crumbs will annoy you for hours afterwards. It’s realising your health insurance doesn’t cover the operation you’ve just had and crying down the phone to a woman who is unable to help you. It’s seeing all your savings gifted to another version of yourself: a woman free from anxiety so she can lead a full life and have lots of friends. It’s thinking way too much about your surgeon’s woodworking hobby and hoping they’re shit at it. It’s visualising yourself way too much, it’s being bored with your own body, but secretly still obsessed by it.

--Music fade--

In this episode, we’re focussing on gaslighting and patronising behaviour as well as the importance of representation when it comes to chronic pain. You’ll hear from London-based filmmaker and video journalist Jameisha Prescod and an excerpt of I’m Not a Good Girl by Melbourne-based artist Sam Petersen.

Jameisha: My name is Jameisha Prescod, I'm 25 years old and was diagnosed with an autoimmune disease called Lupus at 19. And I also make videos about chronic illness online, basically.

Georgia: How do you describe Lupus to people?

Jameisha: So, I describe it like in two ways. The more science-y accurate way is just like it's an autoimmune disease. So essentially, your immune system is meant to protect you from intruders, viruses and other harmful stuff. So when you get a cold, the reason why you get better is because your immune system fought off the virus. But with Lupus and other autoimmune diseases, the immune system kind-of overworks and it gets a bit confused, and it fights the healthy tissue in your body instead. So it kind of is attacking your health, the healthy parts of you, which can cause all sorts of symptoms like joint pain, muscle aches, fatigue, and all other stuff. I mean, for some people it even get to the point where it's organ damage. But the way I kind of describe it to people, just to make it simple, is it feels like the flu all the time, without the runny nose all the time. (laughs) That's kind of how it feels.

Georgia: And I've been asking people what kind of words spring to mind to categorise their pain? Are there any adjectives or, um, symbols that you think of in your head when you're experiencing it?

Jameisha: I would say the pain feels like it's alive. I know that sounds weird, but it feels alive. It's not always the same. Constantly. I can't like give it a consistent sort of description. But it feels like it has a mind of its own. It feels like it breathes, like it pulsates. Or sometimes it's dull. It's consistent. Sometimes it moves, it just feels alive.

Georgia: And what's the experience for you like sharing something so personal so publicly? How do you navigate that?

Jameisha:I would say at the beginning of when I started making these videos, and talking publicly about my symptoms, and my pain and my experience. It was very separate to the management process. In fact, I mean, no one believes me when I say this, because I make a lot of videos now, I absolutely do not like being on camera that much. I'm going to be real. Sounds quite funny for someone who films herself all the time and takes pictures and posts them on Instagram. I know like it's, it's, it's wild. But to be honest, before I made these videos, I would run away from the camera. In fact, I would probably take the pictures on purpose, [so] I didn't have to be in the photo. So the idea of even sharing openly about my symptoms and stuff was just a foreign concept. However,

[Music: bight high tones reverberate, like chords on an electric guitar.]

I wanted to share something. And I remember having a mentor say how can you expect a community of people to share their experience with you, if you're not willing to share with them, they're not gonna to trust you [there] has to be a two way sort of system.

Clip: Jameisha “Hey guys, welcome to You Look Okay To Me and today I’m going to be riding a wave …”

--Music fade--

Georgia: In one of your earlier videos where you talk about like getting your diagnosis, you speak about how important it was to hear a Lupus specialist actually confirm your diagnosis and how it kind of almost made you feel better or, most importantly, validated. And I was just wondering if you could speak about, like the importance of being believed.

Jameisha: Being believed I think when you're experiencing chronic pain is, is everything.

Clip: Jameisha “For anyone who doesn’t know, I have Lupus. It's an autoimmune disease that causes joint pain, muscle pain, fatigue. So this all started back in 2014 when I …”

Oftentimes the process is really long. It goes on for years. I know mine did. And sometimes you have multiple chronic conditions also where like, it's taken ages for you to get diagnosed for one. You go for your next one thinking okay, they didn't believe me before, they might believe me now like. And then you still don't get believed. So having someone who is the specialist, not like your mum or not Google, having the specialist say, “Yes, it is this”. Even though you had the inkling in your head for a long period of time. It's affirming because a lot of the kind of diagnosis process when it comes to chronic pain, often gaslights the patient, it makes you feel like you're making it up in your head, and you're not telling the truth or you're just trying to get attention. I know for people that don't have chronic conditions, it might seem weird, but you generally feel happy, not happy to have it, but happy to be believed.

[Music: tinkling bells, bright and a bit eerie]

Georgia: This term medical gaslighting is being used more and more, in particular when it comes to believing the experiences of women, people of colour, and those in the queer community.

--Music fade--

Yeah. I mean, I first saw that term online. And I mean, I'm unaware of whether it's an official term or not, I think I even said in my video, like, I don't know if this is a real term, but it makes sense. I always have to slow myself down when I speak about this, because I don't want to diminish mental health conditions, because they should be treated with the utmost severity as other conditions as well. And unfortunately, they're not. And because they're not when a condition gets parred off as one of those conditions, which also can exist simultaneously with a physical chronic condition, it makes you feel quite frustrated. It's kind of frustrating all round for everybody. Yeah, I mean, look like many of the conditions, when you go through that diagnosis process, a lot of people will have said the same thing, like I had a doctor say that I'm just depressed. And that's why I had the symptoms of Lupus like my joint pain, my muscle aches, my fatigue, all of that was depression, which, funnily enough can actually be the case, like those symptoms can be caused by depression.

The problem is, is that, first of all, if you're not properly investigating all of the options, and then kind of just going, “Oh, it's just depression”. To me that's just like, to me, that's, that's bad practice in general. But secondly, even if it were, why are you not then treating it with the severity that it is, you know what I mean, it's kind of like it's very flippant when they diagnose it. So what that means I think, a lot of the time is that patients feel dismissed, patients don't get the help they need. And also, for me, in my particular case, what the gaslighting caused me to do was run away from anything mental health related, I didn't want any like talk of depression, anxiety, whatever, because I felt like I don't want to be associated with those conditions because they almost didn't diagnose me of Lupus because of those conditions are sort of blaming ‘em and it kind of points the finger at the wrong place. Like when actually my mental health should have been investigated as well as the fact that yes, I have a physical condition.

It breeds a massive level of kind of like distrust and trauma because because of the the systems that are currently in place, and it seems to be that it's quite consistent in multiple places, not just the UK but in America, Australia I imagine. So yeah, I think it should pick up steam because then it holds people accountable this term medical gaslighting.

Yeah, I totally agree. And I'm not sure what the process of going to the doctor is over there. But I feel like it's very geared. You know, for an appointment, you go for an appointment, you have one problem. And within that appointment, you can be fixed. Or you can get a diagnosis or something. Whereas, I feel like chronic conditions kind of warrant a different appointment style, a different management style, that we haven't really evolved to offer people at the moment. People with chronic conditions might have mental health concerns and a range of other health concerns as well. And we haven't quite found the balance of being able to address all of those within a consultation style.

There’s this trust you have with the doctor. And it's a very intimate relationship. And you want to kind of just be able to just be yourself and disclose everything. Because that's going to give you the best treatment options. And I'm just wondering if there were experiences you had that did make you feel safe or what you like to see more of?

I think one of the first things that whenever I know I've got a good consultant or doctor that makes me feel safe is one that makes me feel like we're in a partnership, when it comes to trying to get the best health care plan for me. So oftentimes, I, I do kind of why say, like, [um] careful research, in a sense that, I'm not trying to diagnose myself, but I'm gathering data to understand my condition, understand, like, what my symptoms mean, for me, and I write it down. I do like pain diaries, and, and, and I write questions and concerns, and I write this all down. So when I go to these appointments, a doctor that will make me feel safe is one that reads it, you know, takes his time, or her time, or their time to kind of like, come to the conclusions together. I think a person that has patience, a person that shows me my scans, you know, doesn't doesn't make me feel like they're talking down to me.

People like that, who know medicine so well that they're aware of how quirky it can be. Those experiences make me feel the most safe, treating me like an individual knowing that not everyone's case is the same. Those people I feel forever grateful to.

Clip: Jameisha “I was in the shower, having a shower, as you do, and I looked down at my right leg and I noticed that the scars on my right leg that I’ve had for a couple of years. Right, so these are my surgery scars, as you can see there are all four in a line. There are four because when they do the surgery they do two at a time. So my first surgery were these two and that’s where they went in, and much to my surprise, I thought they were going to go in again through these two for my second surgery and I woke up to find these two. This one is a lot more prominent …”

[Music: slow and gentle tones]

One of your videos that I thought was really important, and also really interesting, was the one where you're talking about scarring, and how dark skin scars differently to light skin. And I think that's something that's really interesting. It's not talked about often enough, and it's obviously of great concern to anyone who has chronic pain or illness and is contemplating a surgical intervention.

Yeah, for sure. I mean, this is something that unfortunately, you oftentimes as a dark, darker skinned person have to figure out on your own and do your own research. So essentially, I've had two hip surgeries, two hip arthroscopies, and the scarring is not that extensive. They're quite small. They're like round scars.

--Music fade--

But what I didn't really realise is how they'd be a bit more significant on me, not all the time, because I have seen patients with lighter skin with significant scarring with similar surgeries. But for the most part, I was told before my surgeries, “Oh, yeah. What was great about arthroscopy is that this, the scars heal really nicely, and you can barely see them.” Which is quite funny to say now, because I look at mine, and I'm like, “No, you can definitely see those. They're definitely there.” Like, and unfortunately, I don't, I think I don't think neither of my surgeons really had it in their mind to think that dark skin would scar differently. I just think it's just not in their brain and in America, Canada, and also the United Kingdom, when it comes to dermatology, there is not much, and you know what, not just dermatology, medical sort of education in general, there are not, there's not much imagery of dark skin in the textbooks. So many of these doctors are not getting an understanding as to what dark scarring would look like. I was oftentimes speaking to estheticians that are telling me about collagen, and that dark skin tends to have high levels of collagen. So it scars because the collagen overproduces essentially, so that doesn't mean that if you have light skin, you're not gonna have significant scars, and to be honest, even if the scars aren't significant, they can have an impact on your self image and your mental health and that's across the board.

But what it means is that, when I'm googling the surgery, and I'm looking at images of the hip arthroscopy scars, I'm only seeing white people, and I have no clue what mine's gonna look like. And when mine started to heal, they were really dark, really pronounced and I definitely got really self conscious about it and especially having tow there's now four little round scars on my right hip and they're really dark and they’re really there and it did bother me for a while. I kind of got annoyed. It was just like, this is so unfair. Like, you know, why are mine like that? And how come people with lighter skin don’t have this. It's so annoying.

[Music: tones, roving and gentle underneath]

But [um] I think with time understanding just how my skin works. Understanding that also scarring is okay. And I'm gonna be real and honest. I'm not someone that's like, “I love my scars. It shows my battle scars.” I'm not. I’m gonna be real. I'm not one of those people either. I'd rather not have them. But, but at the same time I've grown to have that sort of level of neutrality with them. They're there, they exist. I've had a surgery. It's all right.

--Music fade--

I often don't feel fully represented in most like you know art, creativity or whatever. My experience as a woman of color, as a black woman with my chronic pain is intertwined is always going to be intertwined so oftentimes I [feel like] it's either one side is satisfied than the other side is satisfied. But I will say that the first time I think I felt connected to a representation that connected with me was a documentary. A lot of people have seen it on Netflix, it's called Unrest by Jennifer Brea.

She has ME, or some people call it Chronic Fatigue Syndrome, but I think people prefer ME now. And she made a documentary from her bed, about living with a misdiagnosis and all of that she's a woman of color. And I think that was the first time like, I was like, you know, even though we don't have the same condition, when I was watching it, I almost wanted to cry, because I was just like, “Oh, my gosh, like, someone else had this, but they made a whole film about it.”

I don't get to see a lot of black people share their stories. And that's not just simply because of quote unquote, racism or anything. It's also cultural issues within speaking about illness, that's a whole cultural conversation that I'm exploring more in my work where certain cultures it's taboo to talk about pain, or disease, you're supposed to get over it, get on with it.

I'm just seeing all sorts of people speak about pain and how it intersects with the other parts of their identity, which I'm loving right now because as I said, like when I started it was mainly white women and to be honest, I'm gonna be real I want to see more men do it too because if I, if I talk about my audience, yeah, 92% of my audience online are women. We’ll identify as women or whatever, like and 8% is men. And I'm like, “Yo, you guys need to start talking as well. You know, come on. This is not good. This is not good.”

[Music: bright tones mixed in with thumpy and ticking drums]

I'm so grateful for those people you know, because like them sharing their stories inspired me to share mine but now I think it's time that we start seeing more of these things and we are but I would like to see a lot more of different types of people talking about pain.

--Music fade--

Sam Petersen is a Melbourne-based artist, poet, and writer who is interested in what can be done with one’s identity and the space around it. Sam’s work often focuses on her disability and sexuality in relation to access, and the lack of it – to places, people’s minds and opportunities.

Sam: I have a huge hunger for knowledge and yet so much of it is inaccessible to me.

Most of it is in print and I need it in audio.

I miss speech. There is so much to say. I always feel I'm catching up and when I'm with people who don't know me I often get "good girl" or nothing.

[Music: dark and eerie]

These are only my observations. I do not speak for anyone else, they might like being called good girl or good boy. I don’t know, but I definitely do not.

I get “Good Girl” or “Good Boy” at the supermarket, post office, pharmacy, op shop, shopping centres, dentist, tram, train, airports, doctor, restaurants, street and even my own home. The only place I did not get it is at uni and that says everything.

--Music fade--

Please don't pat me on the head or grab my cheeks. It is very patronising. It’s saying I'm bigger than you are. It’s the most invasive because it’s physically touching. I'm all for touching with consent, but patting me on the head is wrong and it isn’t with consent.

When people have done it to me in the past I grab them by the hand and pull them down to my level and pat them back. Some have gone, “eeek” to me messing up their hair.

Now that I only have one hand I grab them by the wrist, tuck it under my arm, so they can’t walk off and I can say, “Do not do that, it’s very patronising”. I want to bite it ...

Here are some examples of how patronising behaviour can become more of a mind fuck.

You haven’t lived till your catheter has blocked and the person on the phone tells you to drink more water to flush it out and it doesn’t.

Instead all that wee had nowhere to go.

It was agony for three hours.

The support workers called the nurses back, but they said all the nurses are busy, which was wrong, a nurse later said that was bullshit. I was in pain and they should have come to me right away.

The support workers called triple 0, and the answer was, the nurses can deal with it.

This is where what you say isn’t taken seriously.

Just take me seriously.

[Music: smooth and calming, building and sitting below]

Yes, there are some people with a disability who need support to make decisions, but people are taking away our autonomy and decision making capacity with their patronising way of being with us.

Thank fuck I have the tummy catheter now. I just wet myself if it gets blocked.

And of course you say “good girl”.

"what a good girl"

(fade out)

MX fade out

[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.

I’d like to say a big thank you to Jameishsa Prescod for taking the time to chat with me and Sam Petersen for allowing me to share an excerpt of her work.

You can find links to Sam and Jamiesha’s websites in the show notes for this episode.

--Music fade--

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

Broadwave PodcastsAugust 31, 2021Broadwave