Tag: disability justice

SA
Thinking of the context of us being in Sydney and lockdown being over, being back out and about, if you could choose just five words to describe the state of your spirit, what would they be?

E
Inquisitive, hesitant, excited, explorative and resilient.

SA
When we were speaking earlier, you were describing the research you were doing around pelvic pain, and you labeled the factors contributing to it as biopsychosocial. I’ve never heard anyone use that term before. I’ve always heard factors referred to as biological or psychological or social but never the three together, and it makes sense to me. For some in the community who might not understand what it means, what are the biopsychosocial factors of pelvic chronic pain? 

E
I learnt the terminology through a neuroscientist who specialises in persistent pain in Australia, specifically a body and mind team based at the University of South Australia. And also Neuroscience Research Australia, Randwick in Sydney. Basically what they’re saying is body and mind are not separate, we are holistic beings. Although we live in the physical body (bio) we cannot separate psychosocial components from our own experiences. Our perception of experiencing pain (because pain itself is a perception) cannot be separated from physical biological experience or away from psychosocial experience. So in a sense, neuroscience recognises that we are holistic beings. 

What we experience through social interactions or emotional wellbeing or disturbances can manifest itself through our own body. If, for instance, you feel pelvic pain on the left side of your body, that doesn’t necessarily mean that there is tissue damage on the left side of your body. There is a psychosocial component that contributes to that perception of pain. It’s expressed sometimes through physical sensations.

SA
In your work, McGill Pain Questionnaire, you incorporate milk as a representation of the hereditary component of pelvic pain. I’ve been really interested in understanding the ancestral component of pelvic pain. In that piece you make reference to the female link and it reminded me of Gabor Maté who wrote the book When The Body Says No. He talks about and repressing femininity. The day after I was diagnosed with endometriosis, my grandmother passed. She always had pelvic pain but undiagnosed, she would often voice the pain. What do you think about the ancestral quality of pelvic pain, specifically relating to women?

E
I can only go by evidenced based research where a lot of scientists say a few things that validate my own experience. Having said that, I can never dismiss my own lived experience that has not really been researched, one’s subjective experience, from the perspective of science. 

If you ask me, there are hereditary experiences through female lines that definitely exist in my condition. My mother always had some sort of pelvic pain. She talks about how she used to have huge clots when she was having her period. Or she used to miss work or school because of pelvic pain. But never diagnosed, of course, in that generation. I don’t know about her mother because she passed away when I was very little. 

Scientists do say that there is some sort of genetic hereditary issue when it comes to endometriosis. But they rarely did any research on “women’s issues”. They call it women’s issues when it comes to pelvic pain although there are many men who also live with pelvic pain. Endometriosis is considered specifically a women’s issue. Science is very heavily male dominated so it just never pulled on their attention to do more research. Even though pelvic pain has existed for hundreds of years.

Going back to using milk as a material expression for my artwork; endometriosis generally occurs during the childbearing years for women. I thought milk was an adequate metaphor to talk about endometriosis. From a cultural perspective, I think it’s an all women thing, not specific to my Korean-Australian heritage. Milk is something all women, even mammals can relate to. Talking about more of a cultural reference to endometriosis, I would point to using seaweed in McGill Pain Questionnaire. When you see the video about pulsing, that is specifically seaweed mixed with water. That pulsing movement is based on thick, mucus like clots that gather together and pulse away. This pulsing sensation is quite common in the endometriosis experience. The reason I used seaweed is because they talk about, if you were exposed to dioxins and a lot of chemical exposures when you were young, you may develop endometriosis. It could trigger the genetic components that start the endometriosis process. I was exposed to a fair bit of dioxins growing up in Korea. Eating whale, and a lot of pesticides that had a huge amount of dioxins. 

This is all, even scientifically, based on conjecture. A lot of research in endometriosis is so sparse. There isn’t a lot of solid evidence on what may cause endometriosis, what triggers the genetic components. We just don’t know. Because there’s hardly any funding within medical industries to support endometriosis research. Even though it is quite a common experience. A lot of the time I’m just going by my own experience and even the not so evidenced based research that floats around on the internet. Which is a kind of commentary in itself. We just don’t know.

SA
One thing that really struck me when I first saw your work was how the artist really becomes the vehicle of filling the gaps, so often where policy and research lacks. I was mind blown because I learned so much more when engaging with your work than I did with any type of interaction with any medical practitioner. It was initially frustrating but also so comforting and affirming. So, I’m very grateful for your practice because as artists we could choose to make art about anything and you’re choosing to fill that void that exists all around the world. 

I want to know if you think that there is an emotional component to pelvic pain and endometriosis. Based on the understanding of the psoas muscle as the region that holds trauma and emotional pain. Do you think there is a link between a woman’s emotional experience and how they experience chronic pelvic pain? 

E
If I’m going by medical science again, there is no evidence. Although a lot of people say there may be links. ‘May be’ in that sense, it’s almost rude that they’re not validating a lot of women’s experiences and hearing their voices as part of research. 

Personally, and by speaking to a lot of other women who experience pelvic pain, yes there is a strong link. I only recently came out as someone who was sexually abused, possibly from when I was born, by my brother. The abuse only ended when he left for America when he was fourteen. Until then, I was his available toy and subject for his sick curiosity, perhaps. That continued with the indifference of my parent’s towards my wellbeing and almost like, he was protected and I was not. So I had to find my own way to protect myself since I was born. Even though I was brought up in a middle class, well off family. When it comes to abuse, there is no boundary. In a way, my emotional expression that seeps through my paintings and sometimes installations are partially a form of me to make sense of my emotional pain and confusion and shame. Although, it is unwarranted. My shame is not because of what I’ve done, but because of society’s stigma that has been placed on the victims of sexual abuse. 

Some of that, I’m sure, physically manifested as pelvic pain. There is a lot of evidence out there that childhood trauma can significantly affect that person’s autoimmune functions, and it changes the brain functions and it literally changes the cell structure. But they’ve never actually done further research on how women are affected by sexual abuse that consequently is effected through pelvic pain. 

SA
Thank you for sharing that with me and I’m so sorry for what you’ve experienced. My sister took out incest on me and I was sexually abused for eight years. Only as an adult did I really process that, and when I began to process that is when I began to process the pain. And I didn’t have words to articulate it, of course, but only when I began to assert boundaries for myself could I really understand what was going on in my body. 

So many of the women that I’ve spoken to who have severe endometriosis have had some sort of violence occur to them as children. To make that link and then see how these systems not only disregard women by looking past this, but also, overlook care for children. It’s heartbreaking and disappointing. 

I wonder how connecting those dots help you, if at all, be with your family and resolve any past traumas. I moved back home after three years of living out of home and had an endo flair last week. My parents are only starting to understand it and they know that I was abused as a child. And when my mother came to check on me, my instant reaction was to get mad and be frustrated which was coming from my inner child who was really hurting. 

How have you moved through that yourself?

E
That’s a big question. I’ve been through a lot of treatment options, I’ve explored a lot.

Before I answer your questions, I just want to clarify that one of the reasons that never spoke about my childhood sexual abuse and physical, emotional, verbal and everything else that came with it, regarding my pelvic pain issues with my GP or gynaecologist was because, once I mentioned that, it would almost give them a reason to wash their hands about caring for me. And send me off to a psychologist, ‘we’re not qualified, you need a psychiatrist, don’t talk to me about your pain.’ 

The medical system is so heavily based on biomechanical perspectives that, anyone, especially women, who come up with links to pain and emotions and childhood experiences, they just don’t want to know. In medical schools, they only learn about persistent pelvic pain for about two and a half hours compared to all of the years of curriculum. They don’t really get a chance to learn much about pelvic pain. So, I don’t blame them. It’s the system. They’re part of the system and come out to care for patients with very complex histories, stories and narratives. They’re simply not equipped. The textbook teaches them about acute pain so they just give us medication and hope for the best. When somebody presents them with a biopsychosocial pelvic pain related issue, within that twenty minutes of consultation, naturally, they don’t know how to deal with it. The easiest option is to send them to a psychologist. Childhood abuse particularly, is just not a helpful clue for medical practitioners to help us along with our pain. I just wanted to put that aside.

I had a similar experience of moving back home with my parents, cos I just couldn’t look after myself for a while. So I definitely understand what you’re going through. Going to people who never protected me, never had the skills to protect me, that concept just doesn’t exist but I had to move back to that environment. That in itself made my pain worse. I would be going through extreme pain and my mother would see how much pain I was under. By looking at my body language, my behaviour, unable to articulate or even speak simple sentences, unable to eat, vomiting, not sleeping and literally crawling around the house. She could see that I was under a lot of pain, but at the same time the burden was on me, to explain to people, including my family who were supposed to care for me, to explain and educate them about pain. I didn’t have a lot of answers myself. I was waiting for my clinicians to explain my experience, but they couldn’t, cos they didn’t know. 

Pain is an incommunicable issue. Socially, I am stuck, as a sole person, to explain and make sense to other people what I was going through. But at the same time, I was going through so much trouble understanding what I was experiencing. Naturally a lot of people go to Dr Google to explain their experience. Or go through a lot of other alternative therapies which have even less evidence based experiences. Being a woman with pelvic pain is a very difficult position to be in. As a carer, for parents or friends who witness your experience of pain, it only highlights their helplessness. You’re a walking definition for their helplessness. When people are forced into situations where they feel helpless, their default mode is to look away. They don’t want to deal with it. They want to help but they don’t know how to. And we can’t tell them how to either. There are so many dimensions and barriers in communication when it comes to pain. 

SA
Cycles of taboo. If you were to look at it from the beginning of our lives and whatever the childhood developmental experience is not spoken about, and then we age into the consequences of those experiences and there’s no language for that either. It’s such a sticky thing to navigate. After I got my diagnosis, just so many relationships in my life began to make sense where the missing link was empathy. The deep connection that I felt with people was usually that they had suffered under violence or lived with chronic pain. So even having to explain myself to friends and family who would say passive, insensitive remarks, I didn’t understand why they were so hurtful to me. After the diagnosis it started to make a lot of sense. Which is also why your work is so amazing because it really does help to create some sort of understanding and empathy for people who wouldn’t usually be able to navigate this experience.

What’s it been like to see how people process this understanding of chronic pain? Do you think there’s more of an understanding now about pelvic pain as a disability? Is that becoming more present to the general population?

E
To be honest, I don’t know what the general population thinks anymore because I’m so surrounded by people who care for me and other people with disabilities. In a sense, I would say yes. More people are starting to be aware of pain or chronic illness.

We are disabled. Personally, it took me a really long time for me to be able to see myself as a disabled person. When I was studying at uni years ago, there was a disability benefit that allowed a week extra of study times and pushed back deadlines. I had to see my GP to see if he could write me a letter to qualify for the disability benefits. And he said, “Oh! Oh yeah, I guess your pain is sort of like a disability.” He had never thought about it before. That was about twelve years ago.

I was struggling to see myself as a disabled person too. Even though my life has been so debilitating and each of my daily functions have been affected, no body told me I was disabled. I thought disability was an obvious thing, that you were in a wheelchair or legally blind – that’s it. My knowledge of disability was so minimal, just like anybody else really. I still saw everything as an ableist person. My worldview was ableist. So, it took a while. 

After a few years of living as if I’m an imposter, I felt like I didn’t deserve to be a disabled person for some reason. I didn’t know anybody who called themselves disabled with a chronic illness. So I was very isolated and felt very alone. The crucial thing is, if you’re disabled, you need to be visible so that it helps other people come out and see themselves as they are, right now. Not five years ago, who you are now. Everything is a work in progress. Our symptoms change, our experience changes. You can’t compare the person who you were two or five years ago. You are who you are now. You need to stay open minded and accept who you are as you go, with the fact that your symptoms and experience will change in six months time or one years time. 

It was only a few months ago that I told my step daughters, teenagers. I just broke down. The reason I told them is because they just didn’t understand. They had this expectation of me to get up early and do things for them and do this and that. I just struggled so much. I couldn’t do the things that they expected me to do, because they expected them from an ableist perspective, even at that young age. They internalized what people ‘should’ be able to do. They had this assumption. I just didn’t need that expectation, it put so much pressure on my body, my psyche, my wellbeing. So I had to come out. I was nervous, they’ve been living with us for so many years and I was only able to say that a few months ago. 

SA
What a powerful example though, for them who will inevitably be surrounded by women with endometriosis and chronic pain. I still find it difficult to think about myself as disabled. It’s frustrating that the onus is put on us and we become the only resource.

Do you have hopes for how the conversation is integrating chronic pain in Australia?

E
In a small space yes. One of my collaborators, Dr Susan Evans, is a founder of pelvic pain in Australia. Susan and a few other strong women got together and made an endometriosis task force and convinced the health minister Greg Hunt to give funding to endometriosis in medical research. Although things are happening very slowly, they started educating high school kids in South Australia and Victoria. More media is paying attention to women’s pain, especially endometriosis. There are books coming out. So yes, yes it is hopeful.

In general, disability justice is starting to gain traction. A lot of arts organizations and institutions are taking it seriously, looking into accessibility. Really educating themselves. 

I have been speaking through medical circles around the globe as somebody with lived experience. People who are interested in persistent pain are paying attention to lived experiences. People are starting to incorporate lived experiences in their pilot studies.

SA
How are you taking care of yourself lately?

E
Several years ago I had to look at my social surroundings for my own wellbeing. I had to be brutally blunt to toxic people around me. It was hard because a lot were my family members. It took many years of psychotherapy for me to deal with guilt. For me to stop them from coming into my life. That was painful but I’ve accepted it finally. I have my own family now. Most of the time I only surround myself with people who care for me and I care for them as well. As much as I care for them, I expect the same level of care in return. If that’s not mutual, I don’t give up. It’s just not worth my well being because it directly affects my health. That’s a strong biopsychosocial cycle.

I exercise everyday as part of my pain management. Exercise is an evidence based pain management that all of my neuroscience colleagues advocate for. Any kind of movement, your brain just loves it. It’s your brain that makes the decisions whether you should be in pain, not your body but your brain. It’s your brain that makes the final decision of ‘yes, you’re under threat’ or ‘no you’re not’. 

I follow a terminology called DIM SUM. Danger In Me, Safety In Me. It was invented by the neuroscientist who trained me about pain. His name is . He’s an amazing science communicator. He and David Butler wrote this tiny little book called Protectometor. What they say is the brain is your best ally so the brain can also be the worst ally when it comes to pain. So how to look after your brain if you live with consistent pain, do everything to make yourself safe so your brain can conclude that you are safe. What you experience is 100% true and should be validated. Everything is subjective so what you experience won’t necessarily be what I experience, but we acknowledge everyone’s pain. We openly embrace diversity. What is safe goes back to our childhood experience, where you didn’t know what safety meant. You didn’t have your safe space so you have to relearn the perception of safety. For me, safety means having a bath. Hanging out with people who don’t judge me, who encourage me and support me. That’s my safety. Having good food, there’s a dietary issue when it comes to pelvic pain. So eating really good quality food is safety for me. I’ve become a food snob, I’m a foodie. Sleep, you need to have good sleep each day. Find good integrative doctors. Finding good clinicians – find your own team. It’s multidisciplinary care. 

Danger In Me is, understand what makes you feel threatened. Toxic people who have abused you, eating bad food, get rid of it. 

Everybody’s DIM SIM’s different. What the protectormetor says is, each day, pay attention to where your DIM is according to your SIM. As long as your SIM is higher than DIM, there’s no way that your body wants to produce pain. If DIM is higher, the protective mechanism will kick in. Pain is necessary to protect you but make sure that you protect yourself rather than allowing pain to kick in.

As long as your own ecosystem is operating in a healthy way, pain is manageable. 

When it comes to long term pelvic pain, you need to adapt your language with your experience. How you view your own pain. Because pain is a protective mechanism, your brain can be your best ally. It sometimes might overreact and think you’re in so much danger, bang, pain. If you can, for instance, change your wording, to see your pain experience, to see your best friend as trying to do everything to protect me right now, you can train your own brain. How do you word your experience? Ask yourself, is this extreme discomfort or extreme pain? If it’s discomfort, acknowledge it as discomfort. Don’t say ‘I’m in pain’. Cos if you do, you’re telling your brain, ‘keep sending me protective mechanisms’. Detach from your experience and observe it. Have a conversation with your brain in a very nice, nurturing way. Bring down that DIM. Be loving towards yourself with gratitude and compassion. Your brain is doing the best to protect you. With that attitude you can up your SIM, even in one day. It’s your attitude. Accept who you are and treat yourself with care and a lot of love. Your pelvic pain experience will become almost like the best thing that has happened to you.