[Nam Kiwanuka]: You're listening to Mistreated. I'm Nam Kiwanuka. Today's episode is the last one of our first season. And yes, the great news is we are coming back for season two. When I pitched this podcast, I had been living with chronic pain and constant bleeding from my fibroids for years. The pain would sometimes knock me out and other times jolt me wide awake in the middle of the night. Chronic pain has been called a silent epidemic. And while 70% of chronic pain sufferers are women, historically the majority of pain studies have been done on men or male mice. Many of us with conditions like endometriosis, PMOS, migraines, fibroids, and painful periods live with chronic pain. So, it felt fitting to end this first season with an episode on it. what it is, the implicit bias towards women in medicine, and the research that's being done to combat that right here in Canada. We'll take a deeper dive on the history of pain research. But first, a conversation with Dr. Tanya Dura, president of the Canadian Pain Society, and Jennifer Daily Seer, who has lived with chronic pain for more than a decade. She is also a co-chair of CPS. They join me now. A warm welcome to the podcast, Jennifer and Dr. Darna. Thank you so much for being here.

[Jennifer Daily Seer]: Thank you for having me.

[Nam Kiwanuka]: Uh looking forward to this conversation on pain because I think it's a topic that we don't really talk about very much. Uh Jennifer, I'd like to start with you. Could you please introduce yourself?

[Jennifer Daily Seer]: Most definitely. So my name is Jennifer Daily Seir and I live with chronic pain. I also represent a number of organizations including the Canadian Pain Society uh with whom I do um work as a person with lived experience.

[Nam Kiwanuka]: And Dr. Denna

[Dr. Tanya Dura]: um so I'm the uh president of the Canadian Pain Society. I am also a physician at Women's College Hospital and I do uh anesthesiology and I practice pain, specifically women's pain in a pelvic pain clinic and I'm the medical director of a program called TAPME which stands for the Toronto Academic Pain Medicine Institute which is a mouthful.

[Nam Kiwanuka]: Well, um that's how I met you. So, I went to put that on the table to let everybody know. Um I was actually researching you before I got to your clinic. I was on the wait list for a year and a half. this is how popular your clinic is. And then when I met you and I left, I swear when you when we met, you didn't treat me directly, but I was at the clinic. You came and said hi. And you said to me, "I'm so sorry for what you've been through." And just the way you spoke to me. I swear I almost started crying, but I was like, "She just met you. Be cool. Be chill. [laughter] Be composed." So, I'm so happy for you to be on the podcast because I think we hear a lot about negative experiences with doctors, but my interaction with you was like the best experience that I've had with any doctor. So, thank you for that. So, we're going to talk about your clinic. Um, but can you give us a definition of what is pain and what causes pain? So the definition of pain is an unpleasant sensory and emotional experience in response to damage to your body or tissue damage or even the threat of tissue damage. And so it's two things. It's a sensation and an emotion. And science is very good at measuring the sensory part, terrible at the emotion part, right? It's not something we can measure because it's also affected by your life experiences, right? And so

[Dr. Tanya Dura]: that is the definition of pain and pain is normally a good thing. So, acute pain, like when you have an injury or you burn your finger on a stove, um, like I do because I'm a terrible cook. [laughter] And so, when you burn your finger on the stove and you have that pain, that's really good. It's telling you, hey, you know, like be aware of what's happening and stop what you're doing. It's a warning signal. Yeah. And it tells your body, hey, you're you're in danger.

[Dr. Tanya Dura]: Then chronic pain is that, you know, that pain keeps going even when you're not in acute danger. And so it's by definition it's pain that lasts longer than 3 months because after 3 months your tissue should have healed like that burn should have healed and then it becomes a disease in that all those mechanisms that protected you in that acute phase are no longer good for you.

[Nam Kiwanuka]: Uh that's the first time that I've had that I've heard chronic pain described as a disease.

[Dr. Tanya Dura]: Yeah.

[Nam Kiwanuka]: Um which blows my mind because it's always been kind of like it's a feeling. It's just you not being able to, I guess, deal with the pain that's in your body. So, what contributes to experiencing chronic pain in the body?

[Dr. Tanya Dura]: Yeah. And that's a great question and it's a question we're still figuring out because it is a disease of the nervous system and the World Health Organization recognized chronic pain as a disease just very recently in 2022 2023 that it came out with a new classification of diseases as a real disease. And we've been studying this for 20 30 years, but we're still far behind in determining exactly what the cause of chronic pain is.

[Dr. Tanya Dura]: Um, and so it's it's I just want to clarify that it's not a symptom of a disease anymore. And so that's acute pain. Chronic pain is a disease within the system where it's almost like your fire alarm bell is broken, right? You that fire alarm bell that kept you alive and told you, hey, there's an issue. If you no longer have an acute injury or an acute issue, then it's actually the fire alarm bell that's broken. So, it's a disease of the nervous system, but there's it's way more layered than that because pain involves uh mental health, pain involves, you know, it affects your sleep, it affects your relationships. So, it becomes a lot more layered than just a nervous system problem.

[Nam Kiwanuka]: Why is it important to make that distinction?

[Dr. Tanya Dura]: Because um you know, it doesn't affect just one system. It affects us as a whole. And that becomes important when you manage chronic pain. It can't just be one drug, one needle, one thing that you're going to do that's going to help you with your chronic pain. It has to be all of those things. All of that that holistic approach to your sleep, to your mental health, to movement, um you know, medications, your diet, all of these things are going to impact how much pain you're perceiving. Jennifer, I'm going to come to you in a second, but I wanted to read a part of an article that was published in 2017 from Harvard Medical School, and it says this about chronic pain. Quote, 70% of the people impacts are women, and yet 80% of pain studies are conducted on male mice or human men. One of the few studies to research gender differences in the experience of pain found that women tend to feel it more of the time and more intensely than men. While the exact reasons for this discrepancy haven't been pinpointed yet, biology and hormones are suspected to play a role. So, Dr. Denna, um, does chronic pain impact women more than men? And why?

[Dr. Tanya Dura]: Absolutely. So, uh, of all the 8 million chronic pain sufferers across our beautiful nation, 70% of those folks are women. It's a huge number. Um, and so, uh, we're also more impacted by pain. So, it'll affect us more in our daily lives.

[Nam Kiwanuka]: In what ways can you,

[Dr. Tanya Dura]: um, and so it'll affect our ability to work, our ability to function at home, our ability to continue at school.

[Nam Kiwanuka]: But why are we more impacted?

[Dr. Tanya Dura]: Um, well, it's, you know, we haven't studied it well and we are catching up. You have to remember that women were removed from pain studies by the FDA in the US and the Canadian research culture followed suit. it wasn't as as deliberate but from 1977 to the late '9s and so we are missing in a whole bunch of data that was collected about pain uh we are you know uh provided treatments and and diagnosed based on a male default model

[Dr. Tanya Dura]: and this is where the harm comes in and that there's delayed diagnosis the medications that we are given either don't work at all or cause so many side effects that it doesn't matter if they work or not they're unusable because of that estrogen binding that that here we are uh in in 2026 and we don't have good solutions uh for chronic pain in women.

[Nam Kiwanuka]: Well, you answer my next question which was what makes chronic pain difficult to diagnose and treat and lack of research.

[Dr. Tanya Dura]: Yeah. And and I'll just give you a small example of my own personal experience. I came to the Toronto Academic Pain Medicine Institute as one of a handful of women and so most of the data uh most of the research is being driven by men. So, they're not going to ask the same questions that I'm going to ask, right? My ask is that, you know, have you been sexually abused? Uh um uh uh you know, what is your work like life like? What is your sex life like? Who who what happens with the children? Like, are you planning on having a family this year? Are you currently pregnant? Are you lactating? These are not questions that we're being asked enough. And so, uh, I think that female and ST like STEM, I think that's going to make a difference in in the direction that the health care system goes for chronic pain in women.

[Jennifer Daily Seer]: So more than 11 years ago I was living a really full life had built a career uh that I was very proud of and had actually developed a passion for climbing mountains. So and what's relevant about this is that I had actually just returned from my second ascent of uh Kilimanjaro when I was really hit sudden very suddenly with right upper quadrant uh abdominal pain and so life as I knew it changed right away. uh you know initially it was acute in the same way that Dr. Darren was just describing and then it flowed into uh a chronic situation. I wasn't able to receive treatment because they were not able to determine what the initial actual cause was. So daily function identity the whole trajectory of my life frankly stopped uh very abruptly. my career halted, climbing disappeared, and uh I want to throw in there that there was stigma that crept in as well. And so, you know,

[Nam Kiwanuka]: can you tell me more about that?

[Jennifer Daily Seer]: I can from the standpoint that you spoke to it earlier in terms of, you know, you generally cannot see pain. Well, that in itself tends to raise questions. Well, if I can't see it and you look well otherwise, well, uh why, you know, what is that? And so personally, I had no understanding of what chronic pain was before I was living with it or before I started down this road. Um truly I think that general population tends to want to see something like a broken arm. They understand that. Uh when they can't see abdominal pain, even though they might tell be able to see something's wrong, they don't understand it. So that's where for me stigma let started in and then because I did not receive an actual reason why this happened uh that added to that layer of stigmatization in terms of you know why don't they know and I came to realize that medicine has [clears throat] come a long way but still has a ways to go and so in terms of understanding all possibilities that way um yeah so that that's kind of it in a nutshell and I think as a result of that it really came to my experience with the health care system has been quite extensive. Um and years prior I had lived with indometriosis that took a lengthy period to receive diagnosis multiple surgeries and so on. So I I really and at the time didn't really recognize that that was chronic pain. Um and it was resolved for me uh you know through a number of surgeries. Uh had physicians saying they should put a zipper in me because there were that many. But uh that in the end ultimately is how it happened.

[Nam Kiwanuka]: Um wow. Uh I don't even know where to start because you have been living with this pain for 11 years.

[Nam Kiwanuka]: And then for indometriosis when you said surgeries, you just kind of said I had surgeries like you had broccoli.

[Nam Kiwanuka]: Surgeries is like you know like it's like a you know your physical, your mental, your everything. It takes you from doing everything that you're supposed to be doing in a day. And also when you said the stigma around it because Jennifer, you don't look like you're your disease, right? And [clears throat] so how do you talk walk me through a typical day navigating that pain for so long on top of that? You can't do the things like mountain climbing, which is so badass by the way, [laughter] but like you can't do that anymore. So talk to me on how you manage a day.

[Jennifer Daily Seer]: That pretty much all sums up Jennifer in one word. [laughter] badass. Sorry.

[Jennifer Daily Seer]: Um, every day is different for me and so I consider myself fortunate from the standpoint that I'm not living with this pain 24/7. I have episodic what would be considered episodic and so uh it can go from 0 to 8 or 10 in a very short time period and I don't really understand or you know and necessarily anticipate when it's happening. So I can speak to those days. Uh in terms of what I do, it's you know actually Dr. Denna spoke to a lot of it in terms of the biocschosocial aspect of things and sort of needing to pace yourself and mindfulness and movement and you know all of these things. So I take certain steps to see what I can do to keep it at bay at least for you know when I feel that coming on. Um, but if I stretch that back to when this first began, uh, and try to tie it into today, what is really striking to me is that I was profoundly grieving the career that I lost. And so, you know, and profoundly grieving the social life and the family life that I I had and thank goodness I was very well supported in terms of my family and and good friends, but nonetheless, it wasn't the life that I was accustomed to. And so that in itself took a lot of time and it was complicated or sort of made to be more uh complicated from the standpoint that I had numerous upon numerous uh medical appointments. And so there was a lot of research going on on me in terms of trying to determine things. Over time I I sort of learned how to do that a little bit better. And for every emergency visit that I went into to get some pain control, they would try to teach me how to manage it at home. And ultimately, I was able to do that for those horrible episodes that would happen or still do. Uh so I it becomes a matter of almost living alongside it. You learn how to live with it. It doesn't take it away. I haven't found a way for it to take it away yet, even though I've been working really hard at that. Um, nonetheless, it it doesn't take it away, but you learn to walk alongside it. And then I mentioned earlier that I I do some work with the Canadian Pain Society.

[Jennifer Daily Seer]: Uh, advocacy became something that I was drawn to. I I when I found out that the patient voice was being involved in pain research in research organizations, I I thought how can I be a part of this because I have to somehow find a way to take this new knowledge that I've you know unwelcome frankly unwelcome guest in my life but to take that new knowledge and do something with it.

[Nam Kiwanuka]: I want to talk to you more about that. Um, and I think what you said that you walk alongside it is such a poetic way to put it because this is like a 24-hour a day on top of everything else that you're managing that pain. Jennifer says something that was really interesting to me was that when she had endometriosis, she didn't realize that it was chronic pain. And we've spoken to so many people on this podcast who are managing um PMOS, formerly known as PCOS, uh endometriosis or period pain, but we don't think of that as chronic pain. Why should we reframe our thinking around that?

[Dr. Tanya Dura]: Yeah. For women, I feel like uh and we know this pain is often path uh psychized and we're made to feel like this is a part of a woman's life, like this is normal for you. You should feel this pain. Well, it's not normal. If a if a young girl is missing school uh because her period pain is so bad, someone has to intervene uh at least or people need to be taught like this is not normal uh and this person should be at least uh reviewed for endometriosis because that will change the trajectory of her life. If you're missing three to four days of school every month, you are not going to do as well in school. Your options for university are going to change. Your options for work are going to change. your poverty level, uh, you're more likely to fall into poverty. So, when I meet folks like you in in the clinic, I always say like, "Thank you. How did you get here? Like, how did you wait this long, right? Like, how are you even managing after all of the these defeats? Like, how do you function?" So, it's a very inspiring job for sure.

[Nam Kiwanuka]: I I wanted to read something to you both. Uh, the disability advocate Alice Wong wrote for Teen Vogue. um uh she passed away in November 2025. Um and they wrote this, "Most people do not understand how pain com command a person's life. I lived with pain my entire life and didn't even know it. The pain I have experienced in my life ranges from muscle tightness due to staying in a seated position for the majority of the day to nerve pain from sciatica and a spinal fusion surgery I had when I was 14. No specialist I can recall seeing ever asked if I had discomfort or pain. I just assumed chronic pain was part of my disability, not something that in itself deserved attention. Since I was a child, the message I received was that pain is to be expected and there's no point trying to find treatment since it would also get worse. Doing the work that you do, Dr. Darrena, um, a few things stood out for me from this article, but the line, I lived with pain my entire life and didn't even know it, and that she assumed that chronic pain was part of her disability. as a doctor you hear that you think what

[Dr. Tanya Dura]: I think um I think it's time to change the narrative a bit in this expectation that pain is supposed to be just a part of a normal woman's life like obviously pain is there to protect us uh but because you know we're exposed to painful periods or menes earlier on in life it doesn't have to be a huge part of our life there is a way to acknowledge it and there is a way to manage things especially when you're young like we have to be teaching uh our young girls um that this is not an expectation that you're missing school and say something and kind of you know put your hand up and say this is not normal, right? Um so I'm hoping and I'm actually very hopeful that things are going to change. Uh this is getting a lot of traction. Chronic pain is the face of disabilities. It's it's I think a women's disease. 70% of people uh with uh chronic pain like we mentioned are women. So I'm I'm hopeful.

[Nam Kiwanuka]: Jennifer, what did you think when I was reading that? What went through your mind?

[Jennifer Daily Seer]: What went through my mind? It pulled me right back to the early days of endometriosis where um I can remember writing an important final exam and not wanting to dulge to my teacher that I was in tremendous pain and of course I failed the exam. I [laughter] wasn't able to write it. And that was like one of many circumstances. And then I also think about you know one of we talked about surgery earlier. The first major surgery I had for endometriosis was considered to be um u sort of checking it out in terms of going and observing. Thank you for that. [clears throat and laughter] I'm trying to find that word exploratory.

[Jennifer Daily Seer]: And the surgeon came to me and now I was in my mid20s maybe at the time. The surgeon came to me a few hours before the surgery and said, you know, if you just go home and start having babies like that, this will solve the whole problem. I had been living with it already for a number of years. Clearly motivated. I was at the beginning of my career and very motivated to that wasn't the the right time for me at at that point. I just wanted to have, you know, some a solution and I wanted to, you know, live better and not live with this horrible pain in my case twice a month for a few days. And so there have been moments along the way that are like that. And I'm so happy to hear Dr. Dire bringing this to the forefront and talking about, you know, the importance of young women knowing this and then ultimately for the people around those young women to also understand and be compassionate that this is not normal.

[Nam Kiwanuka]: This is mistreated and you've been listening to Dr. Darina and Jennifer talk about chronic pain. We'll get back to that conversation, but I want to take some time to look at how pain has been studied and the research being done in Canada to treat it. Pain is complicated to treat and diagnose because it is subjective. When you're asked to rate it from 1 to 10, your 10 might be my seven. Unlike a broken arm, you can't see chronic pain. And in some cultures, a word for pain doesn't even exist. Pain is expressed through a description or similes and there is no concept of what the pain scale is. Stereotypes about who feels pain also complicate diagnosis and treatment. It was once believed and unfortunately still shows up today that black people didn't feel pain in the same way. Dr. Thomas Hamilton, a physician in the 1820s and 30s, was set on proving that quote physiological differences between black and white people existed because he believed that black skin was thicker than white skin. To test this, he conducted experiments on an enslaved man named John Brown. According to reporting from the New York Times, John Brown also shared he was burned alive in his autobiography published in 1855. On this podcast, we've also spoken about the experiments the father of modern gynecology, James Marian Sims, conducted. He experimented on enslaved African women without anesthetics because he also believed that black people didn't feel pain in the same way. That racist misconception still exists today in medical halls. A study from 2016 showed a substantial number of white lay people and medical students and residents held false beliefs about biological differences between black and white people. Quote, "These beliefs predict racial bias in pain perception and treatment recommendation accuracy." And the study also provided quote the first evidence of racial bias and pain perception is associated with racial bias and pain treatment recommendations. Research also shows there is a gender bias when it comes to treating pain. While quote over 50% of chronic pain conditions are more prevalent in women, women are also more likely to be met with skepticism by medical staff. A 2017 study from Harvard Medical School found that women in pain were more likely to be prescribed sedatives rather than pain medication. A 2018 literature review on gender bias in healthc care showed a clear pattern. Men were presented as being stoic, tolerating pain, autonomous, and in control. Whereas women to a greater degree than men are used to internal pain because of menration and childbirth. The reviewed study showed that women with pain can be perceived as hysterical, emotional, and fabricating the pain as if it is all in her head. And this gender gap starts early. A 2019 study from Yale found that grown-ups took boys pain more seriously than they did girls. And yet there's so many conditions associated with chronic pain in women. Endometriosis, POS, fibroids, PMDD, fibromyalgia, bladder pain syndrome, rheumatoid arthritis, migraines, and so much more. Worldwide, migraines are the leading cause of disability for women ages 18 to 49. Even birth control like IUDs can be extremely painful for some. But the US Centers for Disease Control and Prevention updated its guidance in 2024 recommending pain management for IUD procedures, including the use of a local anesthetic. Meanwhile, Canada is a world leader in pain research. One of those researchers is Dr. Jeff Mogul, a professor and neuroscientist who observed decades ago that chronic pain presented more in female patients and needed to be studied. He has been at the forefront of research to prove that pain biology is different in males and females. Now, back to our conversation with another leading scientist, Dr. Darrena, and why more research is needed to understand how pain impacts women differently.

[Nam Kiwanuka]: I was really surprised to learn that migraines are the leading cause of disability for women worldwide. So those are our working years, right? We make up 50% of the workforce. Like think of the you McKenzie had this great report about, you know, if you help women and do, you know, focus on women's health, you'll improve the GDP by 37 billion.

[Jennifer Daily Seer]: That's a lot of money.

[Dr. Tanya Dura]: This is a workforce issue. You know, obviously it's the right thing to do. It's about giving people dignity uh uh to help the female workforce, but it's also a national issue, right? This is a workforce issue. This is a disability issue. Uh the migraine headache piece is fascinating because it is a testament on how hormones really impact our uh pain perception. So uh boys and girls if you look at the pediatric data they have the same incidence of migraine headaches before puberty and then once they hit puberty for girls because of the exposure to estrogen just increases significantly almost triples whereas boys it kind of levels down. And so here you are um with a lack of treatment that is specific to women uh and even our birth control will cause migraine headaches like all of the things that we're expected to do in terms of childbearing potential etc. those are actually going to make us worse.

[Dr. Tanya Dura]: What frustrates me even more, it is kind of the lack of tailored medications for women's pain. I mean, we have specific pain conditions that only women have because of our reproductive cycle that we never address. You can, you know, the thing that affects male reproductive cycle is erectile dysfunction. And I'm sure off the top of your head, you can at least give me one medication for erectile dysfunction. And yet we don't have that same medication option for women who have pain during the reproductive cycle or mental health issues. Listen, premenstrual dysphoria, uh postpartum depression, uh issues with menopause, vulvadenia, pain in pregnancy, uh endometriosis, um all of these issues that surround our our our menstrual cycle or our reproductive life cycle and they're not addressed. Going back to women not being included in clinical trials, right? A lot of the medication that has been tested has been tested on the male body. That's part of the conversation, right?

[Dr. Tanya Dura]: Absolutely. 76 There's a study to show that the 76% of the pharmacocinetics of drugs is affected by hormones, affected by estrogen and progesterone. And so when you take a medication, it may not work for you because estrogen is going to bind it. And this was not studied in you. uh it was studied with you know a testosterone based person and then when you go complain about the drugs or say that you have a sensitivity to them you're seen as

[Nam Kiwanuka]: a burden right like as a difficult patient as complex you're a complex person you know and people feel free to make these weird comments to you about how complex you are versus looking at the medical system and saying oh my god like we're failing this person

[Dr. Tanya Dura]: right we're not we don't have the right drugs for this entire sex which is 50% of the workforce

[Nam Kiwanuka]: I know there are people listening who don't believe that. But I'll just share that when I was dealing with my fibroids that one of the medication that I was given was not for fibroids because there's no medication for fibroids, but it was to treat prostate cancer.

[Nam Kiwanuka]: So, um I want to go back to that question because there's so many people who are in pain. There's so many women who are living with chronic pain. Um, but it's really hard to get um to actually get people to believe, especially when they don't see, like Jennifer was saying, if they don't see you wearing it, they're like, "Oh, it's all on your head." So, I can imagine if you're trying to get leave from work and saying that I am living with chronic pain, but you can't get those papers signed because you look fine. Um, so can pain lead to disability?

[Dr. Tanya Dura]: Yes, for sure. Pain can lead to disability. Chronic pain is actually the face of disability. It's the number one reason you're going to show up to your physician's office is because of a pain associated with a condition or become pain as a disease.

[Dr. Tanya Dura]: Um, and and this is important for women. I know at the beginning you said your clinic is popular and I thought, well, my clinic is not popular. The sad part is there's not a lot of women who practice pain and so women with pelvic pain issues or any other issues that surround our reproductive cycle have to wait in longer lineups. It's quite easy to see somebody for low back pain. It's quite easy to see somebody for shoulder pain, but people who have pelvic pain or or or women who have pain usually have to wait longer. Our pain conditions are the weight lists are are much longer. And so in that time, you actually even creating more disability.

[Dr. Tanya Dura]: And you're right, it is an invisible disease. So you almost feel like you have to prove yourself, right? And it affects every facet. I said it affects your sleep, your ability, your cognition, right? The way you think. And so obviously it's going to create disability not just physically but mentally too.

[Nam Kiwanuka]: And I imagine the longer that you're living with it, your body also the physiology is probably changing as well,

[Dr. Tanya Dura]: right? Your muscles are going to atrophy if you're not moving, right? So that's why movement is so important. That's why we we we really focus on things like physiootherapy and movement. We focus on mental health aspects because that's going to suffer especially when you're on a weight list uh uh waiting to be assessed by a female practitioner. Uh so yes, you become more and more disabled.

[Nam Kiwanuka]: And Jennifer, um listening to all this, you spent so much of your life, uh some of the like your prime years dealing with this pain, trying to get the answers. Um what's it been like trying to get the answers you need for your chronic pain? [sighs and gasps]

[Jennifer Daily Seer]: Exhausting at times. Um you know, you just have to keep on it. I I think what I I came to was that it became obvious to me that the burden had shifted to me as a patient to prove even though there was lots of evidence to the fact that what I was experiencing. Nonetheless, I had to prove over and over again depending on which specialty I was seeing what was going on. So documenting everything, taking extensive notes, negotiating referrals, waiting on referrals, like you know, so that whole it was like a roller coaster ride uh a lot of the time. But self- advocacy ended up being probably the most important thing. And at a time when a lot of those moments I wasn't able to do it very effectively. So those notes I depended on. But nonetheless, when you walk into a room and you're meet, you're hoping for some assistance that way and you're not feeling well, it's not easy. It's not an easy thing. So, um, self- advocacy was critical. Absolutely critical for me.

[Nam Kiwanuka]: Um, Dr. Duran, I wanted to follow up with you on this because it is really hard to advocate for yourself. Um, I was raised in a family where you listen to doctor, you respect authority, you listen to teachers, the police, and um, challenging someone's expertise can be really daunting, especially in an emergency setting. I wanted to read this to you first. Um, a recent study in the journal of the American Heart Association revealed that young female patients aged 18 to 55 years who presented to emergency departments with chest pain had a 29% longer wait time for potential heart attack evaluation compared with their male counterparts. Um, the study went on to say that women of color wait even longer. And this gap also exists for the misconception that if you're black, you somehow feel pain differently or not at all. um what needs to be done to address misconceptions like this which can cost someone their life in an emergency setting.

[Dr. Tanya Dura]: Yeah, absolutely. And we have this data for chronic pain too. It mostly affects folks in marginalized populations, right? Uh indigenous people, people of color. Um and so I think uh we have to advocate on people's behalf. Like I feel like this is unfair to put, you know, Jennifer said it beautifully, the burden on patients uh to help us figure it out. This is a medical issue that we have to study.

[Dr. Tanya Dura]: You know, keeping that EDI perspective in chronic pain is so important. Whatever's happening down south, Canada is very different. um our CIHR, our government granting bodies make sure we have uh an equity lens in all of our research. And I think that's going to push everything forward in terms of determining how can we better serve our marginalized communities, our equity deserving people that we should be studying, uh who are affected most by this,

[Nam Kiwanuka]: right?

[Nam Kiwanuka]: And Jennifer, when you were talking about the advocacy that you're doing, um having navigated such a horrible thing, uh in a way, you've actually turned your pain into purpose. It's something that I say about my situation as well. Um, both you and Dr. Denna are active in the Canadian Pain Society. What have you seen or heard in your work and advocacy about why it can be more difficult for women to receive diagnoses for pain? Uh, Jennifer, I want to start with you for that. Mhm.

[Jennifer Daily Seer]: What I can say is that when I mentioned earlier about the burden uh shifting, I think that what I'm hearing more and more is that many women that I meet are saying precisely the same thing that it is it is very difficult for them to be able to convince others of what they're feeling that is real. Uh I I want to sidebar that I had a great group of physicians working with me. Not everyone treated me in that way, but I'm hearing this from others. And so, um, you know, and the expectation seems to be just keep going, do more, be stoic about it. That seems to be the narrative that follows follows women along the way. And I've heard it countless times through, you know, the work that I've been doing with respect to dealing, you know, chatting with other people with lived experience. and women for sure for sure are are affected in that way in a way that I haven't heard from the male their male counterparts with respect to people with lived experience

[Dr. Tanya Dura]: and Dr. Like I mentioned before, there is going to be a delay in diagnosis because we are far behind. Um and as more women uh are in STEM, are in science, technology, are in medicine, we are going to get those questions answered. We are going to get those diagnosis.

[Dr. Tanya Dura]: Unfortunately, it's not right now, but it will be uh uh coming soon. And platforms that you give us like this, you know, getting these messages across our province, across our our nation uh is exactly what we need. we need to push the message forward. Um, and it's fun working, you know, with people with lived and living experience at Canadian Pain Society. Um, you know, the the the research is all about them. They're not just research subjects. They're involved in the research in research design. Um we have a lot of initiatives initiatives in Canada that you know patients are are part of the research projects in terms of design uh and publications even getting their name uh on on publications. And so I think this is where things need to move. Uh people need to be at the center. Patients need to be at the center of our care. uh we can't just design I call it um you know I don't want to name a car company but a certain car company created this really terrible car it's because they never asked consumers how should we build this car it was just some uh young person's 13-year-old dream to create a car and obviously they'll never sell and so you know we do have to ask people and involve them in the creation of clinical care and in the creation of uh our research because it's going to be meaningless without the patient perspective I think lived experience is so important because and that's why we include stories because

[Nam Kiwanuka]: that's information, right? Because we are people and and we don't all experience the same things in the same way. And I think that's what's tricky about pain too because my pain threshold could be different from your pain threshold. But somehow whenever you are in any setting for pain, Tylenol seems to be the thing that's like, "Oh, just take a Tylenol." IUD, take a Tylenol. Uh surgery, have a Tylenol. Um, so I'm just gonna put you on the spot, Dr. Jurn, for a second. Uh, what treatments does our health care system historically lean on when it comes to pain?

[Dr. Tanya Dura]: Of course, we still do use a lot of acetaminophen. Um, we still use, uh, some pretty basic over-the-counter medications. Uh, but we're starting to think differently. We're starting to include diet and supplementations and vitamin D and vitamin C and E and all of these things that we're really missing. uh trying to take things back to basics, not just using uh pharmarmacotherapy.

[Dr. Tanya Dura]: Um we are going to have some new pharmicotherapies coming down the pike in Canada. Uh I think the opioid crisis kind of scared people uh out of um you know researching and developing more medications which is sad for us and I think sad for the PWL community because if you look at a lot of other uh um diseases like cardiovascular disease uh uh diabetes um uh you know liver uh hepatitis like all of these issues now have a lot of resources uh and good research and have created cures. So um whereas we don't have that yet because we got a little bit freaked out with the opioid crisis uh and using opioids for pain management.

[Nam Kiwanuka]: Uh you said PWLE. What's that?

[Dr. Tanya Dura]: So sorry person with lived experience and person with lived and living experience.

[Nam Kiwanuka]: And also I think part of it is like uh when women say they're in pain, believe them because having like the IUD without the medication or biopsies without medication and just said, "Oh, you're it's just a little pain or discomfort." If I I I if I hear discomfort [laughter]

[Jennifer Daily Seer]: one more time.

[Dr. Tanya Dura]: I gotta remember that. I got to stop saying that.

[Nam Kiwanuka]: No, no, no, no, no. Not you. You can say whatever you want. [laughter] You're the exception. Um but Jennifer, how have you managed your pain uh over time?

[Jennifer Daily Seer]: Well, I certainly um have I looked at nutrition. I became a vegetarian. I you know, that was a choice. Not that I advocate for it, but it was something that I tried. Movement is something I try to do whenever I'm able. Um, you know, mindfulness. I mentioned earlier when I can anticipate something, I actually use Sedukco, you know, it it's a great distractor for me. And so I do what I can to manage it without going to the pharmacological side of things. And having said that, there are times when I need to go there. I just go there reluctantly. And so I manage that very carefully and and uh without uh sort of uh overabundance of it but you do what you can and then you know sometimes it's just time and rest and all a combination of things u but it it nonetheless is well it is a combination of things and I was going to I was just going to comment further around the health care around this so I don't know if you'd like me to talk of course. Yeah.

[Jennifer Daily Seer]: Um because you know I mean we're recognizing I'm so thrilled that we're recognizing that women's health in Canada that there needs to be a like a a gap closed in terms of healthcare and I see it as a cost to delayed care. You've mentioned you know disability. I went on full disability. I was medically retired from my from my work uh unwillingly. You know, I just I did not want that to happen. It's something that was required because of the level of pain that I deal with and so how unpredictable it is.

[Jennifer Daily Seer]: But I would say that the longer pain goes unressed, the worse the longer term outcomes are, not only for economically, but also the individual dealing with that. You asked earlier about how you manage it. There's, you know, that whole family social aspect to it that is um huge. And so by the time women reach pain care uh many of them have waited for long periods of time and I know we're talking about that but I just want to emphasize that I know I was a part of that waiting for extremely long time be between appointments and very critical appointments. So I see I see it as improving care for women is re who live with persistent pain isn't about really special treatment. It's about designing systems that require and or recognize rather the complexity of listening earlier, responding more effectively, of using the right language, of using the words, scientific sort of focus on women and and men. Because when we build systems that work better for those who have historically been struggling to be heard, I think that ultimately we improve care and society as a whole. So it's not just a woman's issue. It's as Dr. Dire said, it's a workforce issue, you know. So there's how we deal with it and there's how the system overall is is dealing with it and capable of dealing with there's a real gap there. And I know that the beginning is is now in terms of dealing and addressing that.

[Nam Kiwanuka]: I love that the beginning is now. When you were saying that you use medication when you need to, I'm like of course. When I was pregnant, um I was really gung-ho about not having an epidural. And then a friend of mine was like, "That's what science is for." So I was like, "Yes, that is what science is for. This is why I love science." Um, in our final moments in in this conversation, which has been really great, Dr. Darina, I promised off the top that I would talk about the Toronto Academic Pain Medicine uh Institute, what is TAPME doing differently in your view?

[Dr. Tanya Dura]: So, a lot of things. Um, I think we are we're we do a mandatory orientation. And I hate those words mandatory, but we really try to make it accessible for everybody uh in order to teach you about pain and to teach you about the resources that you can access without having to wait and you know get misinformed by the abundance of misinformation that's out there that really has no evidence behind it. So we push that really forward. We push something called power over pain which is a wonderful portal that's been created across Canada um with great information about chronic pain and about free resources. Um uh we push information about Pain Canada which also has free resources. Um we push a lot of information onto people so that they can start managing themselves without uh having to see a physician first. We also put the health discipline aspect of the physiootherapy and the mindfulness and all that at the beginning. So you don't have to wait for a physician to see or get this information. You can start those activities and they're covered for most people uh by our ministry through TapMe. Uh we do it in group because obviously um there's a lot of people who have chronic pain and so we can we can't afford right now to provide one-on-one services. Uh but we do everything in group and you can sign yourself up from there. Uh we do research around all of our programs. So we don't practice, you know, it's not voodoo. It is it is science what we're trying to practice.

[Dr. Tanya Dura]: Uh and we teach we're a teaching hospital. So we send those fellows, those residents in there and we give them information about what they're going to ask you. And we want the the youth to understand and and uh trainees to understand uh how you have to approach people

[Dr. Tanya Dura]: and it has to change and the way we speak to folks has to change because I never want to hear these stories again about what people have said to you. It really breaks my heart as a as a as a physician to hear that.

[Nam Kiwanuka]: My intake experience was really great. Um I actually expected it to be like five minutes. So I was I was getting ready to walk out. Every like minute I was getting ready to walk out end up being over an hour and it was such a great experience. Um, one doctor we've spoken to was re on how to get uh research because there's a lack of research around this and the expert said that ring fenced funding for women's health research is needed when it comes to funding pain treatment. What's your call to action?

[Dr. Tanya Dura]: So, this is great and we do, you know, the CIHR has put money aside to study women's health conditions and those women's health conditions are do are are involved in pain. For instance, uh we got funding through our our Canadian government to uh study to diagnose endometriosis early in in young girls. And so uh Canada is doing a great job of putting money aside. You know, we always need more, but they are doing a great job in terms

[Nam Kiwanuka]: even though it's just like 7%.

[Dr. Tanya Dura]: That is right. However, it's better than most countries and we also need uh uh funding from other sources. It can't always just be government funding, right? Uh so so uh you know donating uh to causes where there's research in women's health uh is important. Volunteering for causes uh just like Jennifer uh does with uh Canadian Pain Society. Uh using your voice is power just like what you're doing uh which is wonderful. Getting the word out that this research needs to be done. I mean how how many of you knew that you know we had this little research

[Dr. Tanya Dura]: uh industry you know supporting uh uh research is is ideal. It doesn't just have to come from pharma companies. Um but you know wherever money can be uh uh put to places where we don't just you know give money to things based on legacy. We give money based on things where there's actual need.

[Dr. Tanya Dura]: Uh and we didn't measure that need for a long time. So now we're figuring it out.

[Nam Kiwanuka]: Oh this conversation has been great. Um before we leave I just wanted to give you an opportunity to add anything that you'd like final thoughts anything that I might have missed. And Jennifer I'll I'll start with you. Oh, thanks. I realized you had asked me earlier about purpose and I didn't really elaborate on that. I wouldn't mind [snorts] taking just a moment to talk about that because in addition to the Canadian Pain Society that I volunteer with and [snorts] absolutely adore that, what it that came from is finding my

[Jennifer Daily Seer]: voice, finding a way to, you know, translate some of this hardship into something that's going to be worthwhile for others. sort of I often refer to taking, you know, pain lemons and turning them into lemonade. And I've been able to do that, you know, through work with the chronic pain network, uh through um you know, advocacy through the pain um pain Ontario. I sit on the board with them. I also uh have been co-hosting a podcast around um pain and it's entirely based on the action plan for pain in Canada. I along with two other people living with pain and so we we're doing what we can to mobilize that knowledge and just sort of learn from it ourselves but also just mobilize that knowledge for the general public so that there can be just a little bit more understanding around something that seems to be so misunderstood. And so take every opportunity to, you know, get involved, use that voice, you know, and I encourage people to find ways to, you know, take take their pain and make it make it work for them in some way that will give them gratification or some sort of, you know, sense that they're contributing and and finding purpose in that because after all, we live with it and so therefore, why not do something with it?

[Nam Kiwanuka]: I love that and we'll share your podcast details and Dr. I'll let you have the last word.

[Dr. Tanya Dura]: Thank you so much. I am really honored to be a guest on this show and meeting with you has so much meaning for me. So, thank you. And I [clears throat] know Jennifer talked about her purpose and I have two young girls and I always do everything for the next generation of girls. So, I'm hoping that they'll find answers to any issues they have a lot faster than what you guys have explained, which makes me very sad. And I also don't want to kind of gloss over the fact that we still don't have a lot of data on our non-binary people and our trans uh people. And I think this needs to be addressed as well. So not just women, but all of us. We need to take care of all of us. So thanks.

[Nam Kiwanuka]: What a great way to end this conversation. Dr. Drena Jennifer, thank you so much. Much appreciated.

[Jennifer Daily Seer]: Thanks.

[Dr. Tanya Dura]: Thank you [music] so much.

[Nam Kiwanuka]: This was Mistreated. Thanks for listening. You can follow our show wherever you download your podcast so you can get notified each time a new episode is available. We would love to hear your feedback. You can write me an email at mistreatedodcast at tvo.org or you can reach out to me on social media. Thank you for all of your emails and comments. We appreciate the response to the podcast. I'd like to read a comment from our episode on why is it so hard to get care for the menopause transition. Mary writes this, "A big thank you for addressing this topic and the shortcomings of our current health care system regarding women's health. We've come a long way since my mother's and grandmother's time, but we still have much to do. Women are living longer and deserve a better quality of life regarding menopausal symptoms. Let's keep talking and listening." Indeed. Thanks so much, Mary. This week's episode was produced by Tiff Lamb and me and edited by Colin Kish. Digital shorts by Ariana Longley. Camera work by Max Dussy and the TVO studio crew. Teleprompting by Christy Mloud. Production support from Jonathan Hallowell and TVO's digital media services team. Lorie F is executive producer of digital. Vanessa [music] Casease is vice president media. Thanks so much for listening and we'll see you next season.