女性健康鸿沟与自身免疫风暴：从身心医学、EB病毒到被忽视的痛苦

Nam Kiwanuka: In the last few years, women's health has gone from the margins to the mainstream with everyone from celebrities, doctors, and public figures speaking up for change.

Female Patient: Imagine living with pain for a decade and being told it's all in your head.

Female Patient: I wish we knew about it much earlier. Even though it's not the 1800s anymore, we treat women who report these symptoms as hysterical.

Female Patient: Yes. So many women are having to piece it together themselves. You are never done with menopause because menopause is never done with you.

Female Patient: I don't think it should take a BAFTA for the world to see what endometriosis really is. But last night, that's exactly what happened. Bringing the women's health gap to center stage. In 2025, we launched the Mistreated podcast talking with experts and people with lived experience about the women's health gap.

Female Patient: This is what we see consistently. Women's bodies, women's health, women's pain is not taken seriously. There are just so many things that you're told to say and feel, but anger is never one of them.

Female Patient: There's still this if women are in pain, it's hysteria. It's an emotional issue. We're all exaggerating.

Female Patient: If I'm getting treated like this, who else is?

Female Patient: Women were not included in clinical trials up until 1993. OMG. What?

Female Patient: And so we are missing in a whole bunch of data that was collected about pain.

Expert: There's a quote that's been attributed to one of the 1800's pioneers of medicine, Rudolf Virchow, who supposedly said, "A man is a human with some testes, and a woman is a pair of ovaries with a human being attached."

Nam Kiwanuka: Oh my god.

Nam Kiwanuka: Where's a chair? I want to throw it against the wall.

Expert: Absolutely.

Nam Kiwanuka: So, how did we get here? Why is women's health underresearched, underfunded, and misunderstood? This is why we created Mistreated, a podcast on women's health. Because the practices of the past continue to impact women's health today. Welcome to season 2 of Mistreated. I'm Nam Kiwanuka. The Mistreated Podcast launched in 2025 to examine the women's health gap with conversations focusing on experts and those with lived experience. One of the conditions that we've been learning about is autoimmune disease. And it is complicated. While autoimmune disorders are found to affect around 1 in 10 people, there is no exact number of how many there are. Researchers in the UK report that there are more than 80 types of autoimmune diseases. Although men also get autoimmune disease, women make up approximately 80% of patients and global cases of autoimmune disease arising. In a bit, we'll speak to Dr. Gabor Maté who has written multiple books on stress and trauma and the impact they can have on various illnesses including autoimmune disease. We also speak to a neurologist on the connection of the Epstein-Barr virus and why women with some autoimmune conditions were once advised not to have children. Plus, we talked to an epidemiologist who studies women's health on why autoimmune disease affects women at such a staggering rate. According to a 2021 study, women make up 75% of patients with MS and autoimmune disease. We speak to a young woman with multiple sclerosis and I was shocked to learn the cost of one of her medications. But first, we met up with Dr. Gabor Maté in Vancouver. In his book, When the Body Says No: The Cost of Hidden Stress, which came out more than 20 years ago, Dr. Maté made observations on how autoimmune disease has a greater impact on women than men. We are so grateful to Dr. Maté and his wife for the warm welcome into their home for this interview. He joins me now.

Nam Kiwanuka: Dr. Maté, could you please introduce yourself?

Dr. Gabor Maté: My name is Gabor Maté. I'm a retired physician. I worked in family practice, palliative care and addiction medicine and I've written five books.

Nam Kiwanuka: We want to talk to you about autoimmune disease. Post-COVID it seems like we're talking more about how lived experience and stress impacts our health. But this is something that you have been talking about for decades. In Myth of Normal, you write this: "Health and illness are not random states in a particular body or body part. They are in fact an expression of an entire life lived. One that cannot in turn be understood in isolation. It is influenced by or better yet it arises from a web of circumstances, relationships, events, and experiences." Why should the story of someone's life help to inform their illness?

Dr. Gabor Maté: The human body is inseparable from human psychology. And in 1977 there was an American physician, psychiatrist and internist George Engel who called for what he termed a biopsychosocial view of medicine which is to say that the biology of human beings is inseparable from their psychology which is inseparable from their social relationships. So on this podcast we talk about women's health and we've spoken to a lot of women who are trying to find the answers that they need about the condition that they have and unfortunately when you are in need of care and you have a condition that a doctor might not be as well versed on you become...

Nam Kiwanuka: ...like fibromyalgia or...

Dr. Gabor Maté: ...yes fibroids, endometriosis...

Nam Kiwanuka: ...chronic fatigue, endometriosis...

Dr. Gabor Maté: ...all those things. So then you become kind of like your own expert. I joke that I'm conducting a clinical trial myself.

Nam Kiwanuka: But I think what ends up happening is that when women who have had to, who are in pain, who can't find the answers that they need are then told that, you know, how you are living, the stress or things that happened to you when you were younger play a role in your illness, that it can come off as if you're being blamed. If health is more than just genetics and is connected to our lived experiences and stress, are we being blamed for getting sick?

Dr. Gabor Maté: Blame is unscientific, cruel, and totally beside the point. It's not a question of blame. It's a question of empowering people. Now in my years as a family physician I had an advantage because I could see people before they got sick.

Dr. Gabor Maté: The specialist who knows a lot more about say the immune system or the nervous system or the hormonal apparatus or the intestines or the heart than I do, as they should, doesn't know the patient until they're sick. Once patients walk into their office, they already have a diagnosis or at least they already have a disease entity. And what I noticed that the people who got sick, there's certain patterns. I can also tell you that when people turn these patterns around, their illness gets a lot better in many cases. So, it's not a question of blaming people.

Nam Kiwanuka: I understand what you're saying and I think especially with how women have been treated in women's health, I always worry so much about the lack of trust. Because I think some people might assume that when you are saying it's because of you being a nice person or you not setting boundaries, it's putting the onus on the individual who has the illness. And it reminds us of a time of when women were called hysterical when physical symptoms were dismissed...

Dr. Gabor Maté: That's only because doctors, and still when it comes to these ill-defined illnesses like fibromyalgia or chronic fatigue, doctors are very uncomfortable with it because if they can't demonstrate an X-ray finding or a physical sign or an obvious symptom, they just don't know what to do with it.

Dr. Gabor Maté: But that's because they don't understand the mind-body unity. And nobody's being blamed here. This is not surprising to you. A lot of people are getting information on social media about their health and women more so. There's this trend that's going on on social when women are saying, "You're being too nice. You're making yourself sick. You need to say no." And they're talking about one condition, autoimmune disease. What is autoimmune disease?

The immune system is meant to protect you against external invasion or internal threat. So viruses, harmful bacteria, toxins and so on, the immune system is trained to recognize them and to destroy them, to attack them. So the immune system has been called a floating brain. It has memory, it has reactive capacity...

Dr. Gabor Maté: ...and it has learning capacity. It's like a brain. Now, not only is the immune system like a brain, it's connected to the brain by all kinds of ways. So a healthy immune system protects you from external or internal threat. That's what the immune system does. Now it's like the Canadian army theoretically is here to defend Canada. But what if the Canadian army invaded Canada in a hostile way? That's what an autoimmune disease is. The immune system that's designed by nature to protect you turns against you. So it attacks your joints as in rheumatoid arthritis or lupus. Attacks your connective tissues as it does in scleroderma, attacks your nervous system as it does in multiple sclerosis, attacks your intestines as it does in inflammatory bowel disease like colitis or Crohn's disease. Attacks your skin, attacks your brain, on and on and on.

Nam Kiwanuka: We will expand our conversation with Dr. Maté on an upcoming episode of Mistreated. I thought a lot about my interview with Dr. Maté and what he told us about how too often when we are diagnosed with an illness, our lived experiences aren't considered. More with Dr. Maté later. But what's it like to live with an autoimmune disease like multiple sclerosis? And what if you've never seen your condition represented with someone who looks like you? According to a study published in 2025 in Nature Reviews Neurology, quote, "For many years, MS was seen as a disease that affects mostly white women." According to researcher Teresa Gilner, one of the co-authors from the study, she adds, "We've found that the disease is actually more common in black women, and we have evidence that disparities in the environment and the health system are driving that trend." For this episode, we reached out to Rebecca Price, a young Canadian woman with roots from Jamaica. She calls a diagnosis of MS an ultimate act of love. Rebecca Price joins me now.

Rebecca Price: My name is Rebecca Price and I am a yoga teacher, movement facilitator, and I have multiple sclerosis.

Nam Kiwanuka: When were you diagnosed with multiple sclerosis?

Rebecca Price: I was officially diagnosed on February 14th. I call it the ultimate act of self-love because 2023, so like 4 years ago, and prior to my diagnosis I had actually lost the vision in my left eye. And that's how I found out that I had multiple sclerosis. However, like now looking back I noticed that there's probably symptoms or relapses that I was having that I kind of just dismissed. But losing your vision, because it totally made me lose the vision in my left eye, clearly that was something that you had to pay attention to versus like, "Oh, I'm sweating, maybe it's menopause," like all these other symptoms that I was having. I wasn't necessarily paying attention to them until I lost the vision in my left eye.

Nam Kiwanuka: That must have been really scary for you to go through. When I asked you when you found out, you said February 14th, an ultimate act of love.

Nam Kiwanuka: Can you talk to me about that?

Rebecca Price: Just because it's Valentine's Day, right? And so for me it was just that prior to that my family doctor, because I called her I was freaking out. I was like, "Hey, like I was perfectly fine a few months ago when I went to go see her." I go for yearly mammograms because my mother passed away from cancer. So I was like, "I went to you, I saw you, everything was fine and how do I just like someone's telling me I have MS, right?" And so she called me and she said, "I see lesions on your MRI, but I can't officially diagnose you." So the next day when I went to go see the optic neurologist was who I was referred to. He told me that I had multiple sclerosis. And I don't know, I call it the ultimate act of self-love because I've had to really relearn how to love myself and live with myself and grieve at the same time because there's so much that you lose along the way of having this disease.

Nam Kiwanuka: Did you know what MS was when you were first diagnosed with it?

Rebecca Price: Um, I just understood it like not to sound ignorant as like a disease that impacts white people like literally and it had nothing to do with me, right? And then when I did my research and I saw what the disease is capable of doing, then I got really really really scared. It's so weird because I occupy this space in wellness, right? And a lot of the work I've done has been around like representation and inclusivity and wellness, right? And so for me, like I've never met another, the only other black person I ever knew who had MS was Montel Williams, right? So when the doctors told me, I was like really shocked because I didn't see myself represented, right? And so there was like a learning curve, right? And then there's this whole entire thing of like, "I did all the right things. Like I eat right, I do yoga, I meditate, all the things that would supposedly help you not be ill, right? And I work in wellness."

Nam Kiwanuka: Did you blame yourself?

Rebecca Price: No, not necessarily blame myself. I felt like I feel like, how do I say this? Some of my counterparts in the industry kind of were like, "How did it happen to you?" I think for me it was like and it is still this place of like learning and seeing and being and then also understanding that like there's a level of like blame, right? Like what did I do wrong? So I think the first thing I went into was like asking myself like what did I do wrong? What could I have done better? I'm doing all these things like I eat like a certain diet like all these things and I ended up getting sick.

Nam Kiwanuka: When you did find out, you said to the doctor, "Black people get MS."

Rebecca Price: The highest number of people being diagnosed with multiple sclerosis right now are black women, right? And there's a very big gap around the conversations when we're talking about studies that include black people, right? The impacts of multiple sclerosis and disease progression when it comes to black people. And so if you're not seeing yourself being represented in studies, if you're not seeing yourself being represented in like information or spokespeople and all those kinds of things, then how are we supposed to be able to like work towards a cure? And I sat on not telling people because I move my body for a living...

Rebecca Price: ...and to slowly understand that I can't move my body for a living is very hard, right? And so I sat on that for a very long time before I actually officially announced it because I also recognized that like I wasn't being authentic to who I am. And the moment that I started being open about the fact that I had multiple sclerosis, I was getting DMs left, right, and center from people who are like, "I have multiple sclerosis. I have lupus. I have this." Right. And they were all racialized people.

Nam Kiwanuka: You live in Canada, but when you found out that when you were trying to establish a care team, you booked a ticket to fly to Atlanta, Georgia to see a neurologist. How come?

Rebecca Price: So, my navigation through the medical system here has not been the easiest. And when I first got diagnosed, I went blind. I lost my vision for a very long time, several months. And it was also during COVID, so I bear that in mind because up here it was very hard for us to get care. But when I got diagnosed I was referred to a neurologist. My opto-neurologist at the time referred me to a neurologist and when I went to go see him he told me that I looked like I didn't have multiple sclerosis. Right. He told me that I look too strong. I went in armed with like should I do an anti-inflammation diet, Wahls Protocol, like all these things because I did my research. And so he told me that I didn't look like someone who had multiple sclerosis and I think I left confused because I had somebody tell me I had this thing. I was put on prednisone for a month and prednisone is not fun to be on. It's like a very harsh steroid on your body and then all these other symptoms started to manifest because I was on it. And I was like, well, I have two doctors saying that I have it. I have an MRI confirming that there was damage to my optic nerve. And then you're sitting there and saying, "Oh, it could have just been just like a little thing. Don't worry about it."

And then a month later I lost the use of my legs. And so then I called him back and I was like, "Hey, what's up?" And then they were like, "Oh, you have to wait to come see," and all that stuff. So I went online and I looked and I found Dr. Mitzi Williams. She specializes in black women with multiple sclerosis. I called her office. I'm like, "I know I'm from Canada. You probably won't be able to... I just need help." And I booked a ticket, went down to Atlanta, paid all those medical fees that you have to pay to see her. And she took out my MRI results, and she said, "Here's a lesion here. Here's a lesion here." She used hip-hop acronyms because she's like, "This is Method Man, and this is whatever," and she showed me exactly what was going on with my body. And then she confirmed that I had damage or lesions on my cervical and my thoracic spine. And then I flew back to Canada. I made another appointment and I asked for another MRI. And then when I did the next MRI, then he also was like, "Okay, yeah, you do have it and here's all the lesions." And I was like, "Okay, now what?"

Nam Kiwanuka: What does your body feel like when you're having a flare?

Rebecca Price: I think I've kind of gotten to a place where I've become really comfortable with being in pain. I don't think that I understand what it's like not to be in pain anymore, right?

Rebecca Price: I feel like, you know, when they tell you you have it, they're like, "Oh, this is your new normal." I'm like, "What is normal?" Because that understanding of normal is also rooted in like very ableist understandings. And so, you know, I live in constant pain like all the time. I'm on painkillers that I don't understand if they're working, if they're not. I don't have any feeling in my hands and my feet. My gait is off, so walking is very difficult. I can't run anymore. So to see the decline, the progression cognitively speaking too as well like brain fog, extreme fatigue, things of that nature.

So, I live in a constant state of always being in that state that sometimes when I have a really bad flare... and understanding that now flares, there's relapsing-remitting MS means you have a relapse and then you kind of take steroids or do something about it and then you bounce back, right? When you have secondary progressive MS, when you have a flare, there is no bounce back. It's just damage, right? So, you have to learn to be comfortable with the fact that like maybe tomorrow I won't be able to walk up the stairs or maybe tomorrow I might be in a wheelchair.

Nam Kiwanuka: Right? I thought it was so interesting that after you were diagnosed with MS you decided to run a farm in Jamaica.

Rebecca Price: Yeah. So I'm Jamaican. And after losing my vision, I decided to go back to Jamaica and I noticed that my symptoms kind of really dissipated, right? And so what I decided to do was like, in the MS community people often despair, but I decided to show up differently.

Nam Kiwanuka: And how was it for you?

Rebecca Price: It is a journey. It's something that allows me to show up a different way.

Nam Kiwanuka: Tell me more about that.

Rebecca Price: There's something about being on the land, like you garden.

Nam Kiwanuka: I do. I do. Yeah. I love it.

Rebecca Price: So, you see, you can plant seeds...

Rebecca Price: ...and you can watch them grow and I think that having...

Nam Kiwanuka: But you're running a farm.

Rebecca Price: Yeah. No, but what I realized is that it teaches me so much about navigating living with this disease. Teaches me about patience. It teaches me about like the idea of like you plant a seed and it doesn't work. Like a plant of corn, we have a drought. It teaches you the idea of like not giving up. It teaches me so much around the whole entire idea of just like learning to be still...

Nam Kiwanuka: ...right, and to slow down and like to pour into myself. What's it like to live with a disease that's invisible? It doesn't have a cure and one that progresses over time.

Rebecca Price: I feel like I don't look like what I'm going through.

Rebecca Price: And sometimes I struggle with that because sometimes I'm just like I'm really struggling right now, right? And people just don't get it or they're just like, "Oh, she's fine." And I'm not fine. I'm really not. And so I feel like it's this duality. I feel like we have very ableist understandings of what disability looks like. So if you see someone in a wheelchair, okay, they're disabled. If you see someone missing a limb or visually impaired, oh, they're disabled. But today, I could come in here and be perfectly fine and tomorrow or even an hour from now. I've gone shopping at the grocery store with good intentions. By the end of the time I'm at the grocery store, I can barely walk.

Understanding that having an invisible illness, having an invisible disability is something that's very dynamic. Like, "Oh, is she exaggerating or is it in her head?" and all these kinds of things, you know? I think that's a very hard space to be in because you're navigating like preconceived notions of how you're supposed to show up. And I always tell people like I'm not here for your like disability or chronic illness porn. Like you know what I mean? I'm here and I'm also trying to show people that we can learn how to navigate our diseases and also try to thrive. Like it's not the end of the world. And I talk about that a lot online, like how can we reimagine or how can we pivot and all those kinds of things, but the idea of like our ableist understandings of what disability looks like impacts our everyday interactions of how we navigate spaces.

Am I allowed to sit on the disability cart on the GO train? Can I park in the disability parking spot? Today I really can't get out of bed and but things still need to happen. Am I given that grace that someone else is who visually looks like what you understand disability or an illness to look like?

Nam Kiwanuka: Look for our expanded conversation with Rebecca on a future episode of Mistreated. Canada continues to have one of the highest rates of MS in the world. That's according to MS Canada. There is no cure for any autoimmune disease. I was really surprised to learn that women with some autoimmune conditions were once advised not to have children. And if they did, they were doing so at their own risk. To understand this better, we reached out to Dr. Dalia Rotstein, a neurologist who specializes in MS at the Barlo MS clinic at St. Michael's Hospital in Toronto. She explains what neuroimmunology is and the research around the Epstein-Barr virus and MS. She joins me now. Your field of study is neuroimmunology. What is that and what led you to this field of study?

Dr. Dalia Rotstein: If you break it down, you know, immune diseases of the nerves or nervous system. And one of the most common neuroimmune diseases is multiple sclerosis. In particular, unfortunately, is a very common disease here in Canada. So, it affects about one in 400 people and as many as one in 200 women. I also focus on some other more rare neuroimmune diseases. So, there's one called neuromyelitis optica spectrum disorder and another called MOG antibody disease. And these diseases also often cause vision loss, weakness. Sometimes people are confined to a wheelchair within a few years because of these attacks. They can attack the spinal cord and unfortunately cause quite a bit of disability. But we do have many effective therapies today too.

Nam Kiwanuka: Well, according to your research, the rare neurological conditions that you just went through predominantly affect women and they often start as they're beginning their families and building their careers. Do we know why?

Dr. Dalia Rotstein: So neuromyelitis optica spectrum disease actually affects eight to nine women for every man affected. So it is predominantly a disease of women. We don't know exactly why, but research has led to some clues and we think it's probably multifactorial. So for one, you know, estrogen is the hormone that we have in high levels in women and estrogen can lead to immune system activation. So it leads to increased production of antibodies and also activates these B and T cells which are part of the immune system.

We also know that women of course, you know, we have the two X chromosomes which are the sex chromosomes that determine that we end up being women versus men who have the X and Y chromosome. And in women, one of the X chromosomes is inactivated. But sometimes it doesn't get completely inactivated and there are important genes on that chromosome that affect immune system regulation. So in turn, you know, that can cause overproduction of these genes and overdrive of the immune system.

And lastly there are probably environmental factors that play a role in this. We know that environmental factors are important to many different autoimmune diseases including neuromyelitis optica spectrum disease which is a mouthful. But the way women handle different environmental triggers can be different than men. So, for example, Epstein-Barr virus is an infection that we think is linked to multiple sclerosis and the way women handle the virus is different than men.

Nam Kiwanuka: I'm so glad you brought up Epstein-Barr virus and this is one of the best reasons I love doing this podcast is to talk about the fact that certain conditions impact women more and because women were not included in clinical trials until the '90s. We don't really know the why. We're trying to figure out the why. But Epstein-Barr virus has come up a couple of times in different conditions. I've heard it connected to like EDS. Can you talk a little bit to me about Epstein-Barr virus because I think sometimes people are like, "Oh, that's the thing that causes mono and mono seems to be like a rite of passage in your teens, right?" And it's kind of like, "Oh, it's a kissing disease." But can you talk a bit more about the seriousness of Epstein-Barr virus?

Dr. Dalia Rotstein: Yes. I mean, you highlighted some really important points there. So, Epstein-Barr virus is a virus that causes infectious mono, although in some people it can be asymptomatic. But people often contract this virus either in early childhood or in adolescence or in their teens. And when they get it later on like as a teenager or young adult, it often causes these symptoms like severe fatigue, swollen glands, sore throat, and sometimes a low-grade temperature. The virus though does live on in the body similar to other viruses within the herpes group.

I mean, one really interesting piece of all of this is we know that more than 90% of adults have actually been previously exposed to the Epstein-Barr virus. And yet, this virus is closely linked to certain autoimmune diseases. So, in the last 5 years, there's been really compelling scientific evidence that it is a key trigger of multiple sclerosis and of lupus. And then our team has also done some research looking at the link with other autoimmune diseases like rheumatoid arthritis and inflammatory bowel disease and it does seem to increase the risk there too.

But clearly Epstein-Barr virus on its own is not enough to cause autoimmune disease because almost all adults have been exposed. So we think it's several factors. It's a matter of a genetically susceptible individual getting exposed. It may be that women, as we were talking about, handle the virus a little bit differently because these diseases are more common in women. And it's probably also the accumulation of other environmental risk factors that contribute to the development of the disease. So, for example, low vitamin D levels or exposure to certain industrial toxins can also together increase an individual's risk. So, in a way, there has to be a perfect storm of all of these risk factors coming together.

Nam Kiwanuka: Can you talk to me a bit more about MS and lupus because those are autoimmune diseases that also are linked to neuroimmunology. Correct?

Dr. Dalia Rotstein: Yes. These are both diseases as we mentioned that have been linked with the Epstein-Barr virus and they've actually tracked out these biomarkers of underlying pathology. So with multiple sclerosis there's a biomarker we can detect in the blood called neurofilament light chain and it's a sign of the nerve cells, the axons and the nerve cells breaking down. And basically going back, there are some blood samples available from people with MS even 10 years before they developed MS and we see that after they acquire the Epstein-Barr virus but before they develop MS, that nervous system marker begins to rise. If you look further back to before the Epstein-Barr virus infection, the levels are normal, similar to the general population. So that has helped us to identify that Epstein-Barr virus really is this key trigger in the whole process.

There are also some very in-depth scientific studies that have gone on with lupus to show that Epstein-Barr virus seems to reprogram these key immune cells called the B cells that lead to lupus. It's an exciting time in a sense just because if we have more insights into how these diseases develop, hopefully it will lead to tools in the future both to prevent these diseases and also to treat them more effectively and earlier on. So for example, there's a vaccine against Epstein-Barr virus that's in development.

Nam Kiwanuka: Oh, that's really exciting to hear. Because when we hear some of these conditions, it's so abstract, right? But if you're living with those conditions, it turns your life completely upside down. So if a young woman walks into your office and they have MS, and they want to start a family...

Dr. Dalia Rotstein: So, thank you for highlighting that. It's very difficult to live with these diseases. They're chronic illnesses. They often have a high symptom burden on a daily basis. So symptoms such as pain and fatigue that can limit daily activity even though they're often symptoms on the inside, right? So people outside may not perceive them as sick or having limitations. So all of those aspects are challenging, but family planning can be particularly challenging. Of course, this is a key part of going through life and sort of your dreams for yourself and your family is whether you're going to have children and how are you going to bring that together in terms of being a mother and also with your partner parenting together.

So I think it's really important when somebody has a diagnosis of an autoimmune disease like MS that early on they speak to their physician about family planning. So they should voice whether or not they want to get pregnant in the future. That can affect some key decisions about which medication is used. So there are some medications that we've studied and accumulated experience over time with and we know they're safe for conception. For multiple sclerosis, we know that the disease usually gets quiescent or quieter during pregnancy. So many women do okay off of treatment during pregnancy.

Historically, women were told actually if they wanted to get pregnant with MS they had to come off of their medication months in advance and then many women actually went into attacks while they were trying to get pregnant. So in a sense they were told, you know, get pregnant at your own risk. So I think we've made some important advances, we have more experience today with different medications and we can also give women more informed counseling about the safety of the medication and when to stop therapy.

In the first season of this podcast, we spoke about how the use of Tylenol in pregnancy had become politicized. And one of the issues that I don't think got as much attention when Tylenol was in the news was that pregnant women are rarely, if ever, included in clinical trials. How does this harm women with conditions like MS? Women who were pregnant were systematically excluded from clinical trials. And the end result is often like when a drug comes out on the market we don't have any information to offer pregnant women about the safety of the drug and women may be put on these medications by their physician and then find the medication is really key to their health. But then at the time when they want to become pregnant if there's no existing evidence because they weren't studied in the clinical trial, women are told, "Okay, you have to come off of the medication for pregnancy."

So I think as a medical community it's really important that we put together what's called the observational evidence. So this is evidence that doesn't come from the clinical trial setting, but where a woman with severe disease may have continued the medication during pregnancy and we look at whether there were any risks to the mother and whether there were any risks to the baby. Were there any negative fetal outcomes like miscarriage or fetal malformations? And then when we put all those cases together over time, we can develop enough evidence to say to women as they're planning their pregnancy, "Look, this is what we have." I think there could be more research done in the pre-clinical trial phase to try to figure out the safety of the medication and maybe in the future we should look towards enrolling some pregnant women in these clinical trials, provided there's that preliminary evidence of safety and women are informed of the risk.

Nam Kiwanuka: Yeah. Because people with diabetes become pregnant, people with MS become pregnant. You also want to live the life that you want to live.

Dr. Dalia Rotstein: 100%. And pregnancy shouldn't be seen as an illness. And on top of that, in clinical trials, you know, many people living with other diseases are allowed to enroll, and those diseases also present risk. So, it's not like this is a foreign situation.

Nam Kiwanuka: What is misunderstood about women with neurologic and autoimmune diseases that you want to debunk?

Dr. Dalia Rotstein: I think one is, you know, there's this old picture of the woman with MS or any person living with MS that, you know, is a person in the wheelchair and that's simply not true today which, you know, I'm so happy to say like we've had so many advances in MS. We have so many highly effective therapies and we've appreciated that the earlier we use these medications the better people do. So that still happens definitely, like I said, there are still people with more severe disease who don't respond to the treatments, but many people are able to do very well.

There are probably people you know in your life living with MS where you'd never know they had MS because you can't see it on the outside. So I think it's important to be aware of that, that people can be living with sort of a burden and give them a safe space to talk about it even if it's not apparent on the outside. But the other piece of that is if people are diagnosed, I really want to give them hope for the future because I think we do have a lot to offer them in modern medicine and people are doing much better today with these diseases than ever before.

Nam Kiwanuka: What do you want women and girls to know that isn't talked about enough?

Dr. Dalia Rotstein: I think, you know, women can have a lot of symptoms that are dismissed. So some common symptoms of autoimmune disease include fatigue, pain, rashes, low-grade fever. So I think sometimes women experience these symptoms and you know if they voice them maybe it's to friends or family members or even to a family doctor they can be dismissed. They're told you know maybe it's a result of hormones for example.

But I think, you know, women need to trust themselves and they need to trust what they're hearing from their own bodies and if they're having significant symptoms, they should be investigated. So they should report them to their physician. They should explain just how severe the symptoms are. And if warranted, you know, sometimes investigations do lead to a diagnosis which can be treated.

Celebrities like Venus Williams, Christina Applegate, and Selena Gomez have all shared their diagnosis with various autoimmune diseases. In 2022, Céline Dion shared online her diagnosis: "I have been diagnosed with a very rare neurological disorder called stiff person syndrome, which affects something like one in a million people. We now know this is what's been causing all of the spasms that I've been having. Unfortunately, these spasms affect every aspect of my daily life."

Nam Kiwanuka: Céline Dion recently made her comeback performance in Paris. According to a 2023 study, stiff person syndrome, previously known as stiff man syndrome, is a rare autoimmune neurological disorder with a prevalence of one case per million people. Similar to most autoimmune diseases, a higher incidence in women is noted. The Guardian reports that it impacts an estimated 8,000 people worldwide. What does the science say about why women get autoimmune disease more? And does pregnancy play a role? To find out more, reached out to an epidemiologist in Calgary who specializes in reproductive and women's health. Natalie Scime joins me now.

Dr. Natalie Scime: I'm Natalie Scime. I am a PhD epidemiologist at the University of Calgary and now also a medical student finishing my training at the U of C. With my research, I focus on reproductive factors and how they shape women's health and chronic disease risk over the life course.

Nam Kiwanuka: If women are more likely to get an autoimmune disease, especially when we're talking about like the prime of their lives, I imagine it has a trickle down effect on their careers, their families, and even the economy. Should autoimmune disease be named a women's health issue?

Dr. Natalie Scime: I feel strongly that autoimmune disease is very much a women's health issue. And we saw recently for example through the Canadian Institutes of Health Research, they put out their project grants which is sort of one of the main funding mechanisms for researchers and under the priority topics the Institute of Gender and Health actually named autoimmune disease as a women's health priority topic for that funding competition. So I do believe we're seeing it sort of emerge as very much a women's health issue.

Nam Kiwanuka: I mean it kind of tracks with a lot of conditions for women not to be cynical, but even when we've been researching this topic and we've seen sometimes there's between 80 to 150. Do we have a definitive number of how many autoimmune diseases there are and why don't we know how many they are?

Dr. Natalie Scime: I generally quote over 80 because that's kind of the minimum that we know of and in terms of why we can't quite pinpoint the number, there is some challenge with differentiating autoimmune disease oftentimes clinically. So for example when I'm working in a family medicine practice we may have a patient that is diagnosed as having kind of an overlap between two autoimmune diseases or they may have an undifferentiated mixed connective tissue disease which is sort of a way of saying they're not fitting neatly into one bucket but they do have some autoimmune symptoms. And sometimes it takes time for things to evolve for us to really know what diagnosis that patient has.

And we're learning more and more with diagnostic technologies about various autoantibodies that patients have. And autoantibodies are the immune system's way of developing cells to attack its own tissues, which is the fundamental sort of pathophysiology of autoimmune disease. It's the body mistakenly attacking its own tissues. So we continue to learn about various autoantibodies and are still understanding some of the clinical relevance of those, are they associated with certain symptoms in a various pattern. So I think we're still learning so much about this topic and that's why there's no to my knowledge specific number of the number of conditions.

Nam Kiwanuka: You were named a Banting postdoctoral fellow in 2022. What did you propose to study?

Dr. Natalie Scime: So I proposed to study autoimmune diseases and how we understand whether the risk of autoimmune diseases in women is related to whether they experience pregnancy complications, infertility or sort of challenges related to childbearing. So this came about because at the time of my training, my doctoral training, we were learning so much about pregnancy as a stress test. So to sustain a healthy pregnancy the body has to undergo many changes and many of them put stress on the systems in place.

And so we were learning that pregnancy complications was associated with an increased risk of cardiovascular disease. That's kind of the most established one. And so I thought to myself, well, pregnancy is also an immune activating event. Could it also be a little bit of a stress test on the immune system and give us a window into a female's risk of autoimmune disease? And I wasn't the first to have this hypothesis. There were a number of other studies on this topic, but we really wanted to examine this question using population-level data in Ontario.

Nam Kiwanuka: When you spoke about pregnancy being a stress test for a woman's body, like heart health, immune, we don't usually approach pregnancy as being a stress test. There's this idea that it's a natural, your body knows what it's doing and once you have the baby, the happy hormones, you snap back to how you were before and you skip into the fields and the sunset comes down and the birds are, you know, like it's like a Disney birds are chirping.

Dr. Natalie Scime: The birds are chirping.

Nam Kiwanuka: But why is research like this important around pregnancy?

Dr. Natalie Scime: Pregnancy is very much like can be a very joyful event. It's so exciting. It's like such a sociocultural transition for people. So it can be very joyous and have a lot of positivity that comes with it and for some people they can enjoy a healthy pregnancy, a fairly uneventful delivery, have well be well supported during the postpartum, but that is not the reality for several women, for a significant proportion of our population.

And so studying when things go wrong and what that means for the health of mom and baby both immediately and long term is really important for us to take an upstream approach to addressing important health issues like chronic disease, like developmental disorders in children, pieces like that. It really helps us figure out who is at risk of long-term adverse health outcomes, who do we need to monitor a little more closely and who should we focus on in terms of developing interventions to maybe change the trajectory of their risk. So that's sort of how I approach really explaining to people why pregnancy as a stress test is a helpful model and when things go wrong it gives us clues and it's really important for us not to ignore those clues in terms of how we care for people throughout their life.

Nam Kiwanuka: I just wanted to make sure that I got this right. Are autoimmune diseases rare or is it just some of them?

Dr. Natalie Scime: When you look at them individually, some of them can be quite rare. So, there's over 80 autoimmune diseases that we know about. There are some that are more common than others. So, we classically hear about type 1 diabetes, celiac disease, rheumatoid arthritis, lupus. People might be more familiar with those, but there are some less common ones, things like scleroderma, dermatomyositis, like really technical terms that are less common. When we group all of these autoimmune diseases together though, we generally see that approximately one in every 10 people is living with an autoimmune disease and 80% of those people are female.

Nam Kiwanuka: Do we know why 80% are female?

Dr. Natalie Scime: There's a number of hypotheses as to why this might be the case and sort of varying levels of data to support each. Classically we think of females and estrogen being a main mechanism and it probably certainly plays a role. So estrogen is a very potent modulator of the immune system and it's hard to provide sort of a sweeping statement about what estrogen does. Generally at high levels it's anti-inflammatory and at lower levels can be pro-inflammatory, but it can really have a nuanced impact on inflammation on the various quantity and function of immune cells. So very much impacts the immune system. And then of course there's progesterone, androgens, other hormones that play a role. But estrogen is certainly not the whole story.

There's the reproductive capacity in females. So females will go through pregnancy which as we talked about requires some really dynamic immune changes to allow for implantation, growth of the fetus, labor and delivery. And then the menopausal transition also brings about many changes to many body systems. And then the immune system in females compared to males we know is a little bit different. So there's some data to support that the immune response is a bit stronger in females compared to males. I recently learned, you know, when we look at vaccine trials for example when the data are disaggregated by sex, we know that females tend to mount a stronger antibody response to vaccines than males do. So the immune system behaves a little bit differently.

And then from a genetics perspective, females have two X chromosomes, males have an XY chromosome. So that second X chromosome in females is generally inactive. We don't want to have sort of duplicated genes, but there's some data to support that that inactivation is actually incomplete. So maybe there are some genes that are being overly expressed when you have more than one X chromosome, which is quite rich in genetic material compared to the Y chromosome.

We know that individuals who live in socioeconomically deprived areas who are of a lower socioeconomic status tend to have higher rates of autoimmune disease. And we also know that females are more likely to experience socioeconomic disadvantage than males, whether that be through education levels, income, neighborhood. So there's very much an intersectionality with social aspects and social determinants of health.

It's been very affirming for me to see that at an individual level, there's a lot of receptivity and openness to discussing the topics of pregnancy history, autoimmune disease, female burdens of disease, and my hope is that that will translate to changes in clinical practice on an individual level, but also a more open attitude towards how we research these topics, how we invest in them, and how we really drive clinical change forward.

At the beginning of this episode, we spoke to Dr. Maté about the role our lived experiences play in our health. But what does that look like for Indigenous communities in Canada? According to a 2022 study from the University of Alberta, Indigenous patients with the rare autoimmune liver disease, primary biliary cholangitis face worse outcomes. From the co-lead author Andrew Mason, quote: "This autoimmune liver disease joins the collection of other autoimmune diseases with increased frequency and severity in Indigenous peoples, including multiple sclerosis, rheumatoid arthritis, and systemic lupus erythematosus. Primary biliary cholangitis has been misdiagnosed as an alcohol-related condition." More from Dr. Maté about the mind and body connection.

Dr. Gabor Maté: Psychoneuroimmunology is a field of study that examines the unity of the psyche which is our emotional systems in our brain and our emotions, the nervous system and the immune system. And if you wanted to give it its proper name, it's called psychoneuroimmunoendocrinology. The endocrine apparatus being our hormonal system. So actually the emotions, the nervous system, the immune system and the hormonal apparatus are one system. They're inseparable in real life. And when something happens in one aspect of that system, it affects the other aspects.

Now what if I told you that your difficulty saying no, taking on too much... What if I told you that your compulsive regard for the emotional needs of other people while ignoring your own? What if I told you that your rigid identification with your duty, role and responsibility rather than the needs of the self? What if I told you that your being a nice person trying to please everybody, a people pleaser, repressing your own anger, never setting boundaries? What if I told you that your belief that you're responsible for other people's feelings, never disappoint anybody? What if I told that all these beliefs and ways of being contribute to your health being challenged and contribute to the onset of autoimmune disease, and if you could give these up you would enhance your chances of health?

80% of autoimmune disease happens to women. That is true. There's a reason why women have more autoimmune disease and Indigenous women have more autoimmune disease than Caucasian women and it has to do with social status. Studies linking poverty in childhood to inflammation in adulthood. The emotional system and the immune system have exactly the same role. Not only do they have the same role, they're the same system. Therefore, when people are too nice, they repress the healthy anger, they're also repressing the immune system.

Nam Kiwanuka: Like I guess accepting that anger...

Dr. Gabor Maté: ...yeah...

Nam Kiwanuka: ...can be a path towards healing.

Nam Kiwanuka: In what ways?

Dr. Gabor Maté: Oh yeah. Accepting healthy anger and dealing with it in a functional way is a pathway to healing. And so much of autoimmune disease documentedly has to do with stress in animals or in human beings for that matter. They had to suppress themselves to survive, to be accepted, to be acceptable. Nobody chooses that. That's why there's no blame here. These are adaptive patterns. But it also means that it risks your health and you can turn this around.

Dr. Maté and I covered a lot of ground around the mind-body link from being too nice to emotional suppression. Here's a preview of Dr. Maté explaining how authenticity versus attachment shapes her worldview and can impact her health.

Dr. Gabor Maté: Sometimes when people come to these realizations that all my life I've been a nice person suppressing myself, not expressing my needs, not setting boundaries and so on. It means they'll have formed a lot of relationships based on that dynamic and their spouse. And women face this all the time. But not just women, but by and large women face this all the time. But now I'm realizing because I got sick and I realize I got some boundaries and I'm going to say no. Your partner may not like it. Now if your partner is worth their salt, they'll be happy for you. But what if they don't?

Now you have a question to decide: Which pain would you rather have? The pain of suppressing yourself or the pain of potentially losing a relationship? Ideally, you can have authenticity and attachment. But if your partner or your friends are not willing to accept you when you're being yourself, you have a decision to make. There's no pain-free option, at least in the short term. The question is, which pain would you rather have?

Nam Kiwanuka: What do you want policy makers to know about what it's like to live with an autoimmune disease like MS?

Rebecca Price: I feel like there needs to be more research, right? I think, you know, I have conversations with my neurologist here. I also have a neurologist in Jamaica. And it's really interesting to see the two show up in different spaces. But conversations about what it looks like to be a racialized person suffering from autoimmune diseases because it is different. Being sick is expensive. Like one of my medications without the help of Co-pay or Trillium is $39,000 for one...

Nam Kiwanuka: ...treatment. $39,000...

Nam Kiwanuka: ...for the year.

Rebecca Price: No, for one treatment. And I was doing two treatments, right?

Rebecca Price: $39,000. $9,900 for one treatment and I did it twice. I really feel like policy makers need to understand that like no one, I didn't wake up and say, "Hey, I want to have MS. I want to be sick, right?" And the cost that it is that you incur in order for you to take care of yourself is astronomical, right?

And having an understanding of like it'd be more amendable if you actually took the necessary precautions and put the policies in place for people to be able to take care of themselves rather than me ending up having to constantly go to the emergency room when I have a flare or all these kinds of things, right? I invite policy makers to do a better job at really understanding the financial constraints and impacts. Being sick and being a single mom, right? Like all these things, like how am I supposed to pay my rent? How am I supposed to pay for my medication? How am I supposed to pay for any other additional treatments that I decide to do? How am I supposed to eat gluten-free when bread is $10? And all those kinds of things, and then still have a life that's worth living, right?

And I feel like a lot of people who have autoimmune diseases or conditions or disabilities live well below the poverty line. They're struggling, mental health, physical health, all these things. And it's actually costing us as taxpayers more than if we actually just got it together and made it more amendable for people to be able to access the resources and supports they need in order for them to be well.

On previous episodes of Mistreated, we've explored what the women's health gap in Canada looks like and spoken to those working towards finding solutions. I would say that the problem with women's healthcare in Canada is that it amplifies some of the inequities that are inherent in our system.

Policy Researcher: Our report really found that unlocking women's health in Canada could increase the Canadian GDP by 37 billion. There is absolutely a movement of matriarchy of Indigenous women and Indigenous people reclaiming the space.

Nam Kiwanuka: Women are being recognized more that there is less stigma about menopause. I wish I could live another 100 years to see all the changes and advances that are going to occur. If we want to push the gender parity agenda, we absolutely need to discuss women's health. Decades and decades of women's health being underfunded and underresearched and women being dismissed, misdiagnosed, misunderstood. This is why we created Mistreated, a podcast on women's health because the past continues to impact women's health today.

This was Mistreated. Our thanks to all of our guests for helping us to better understand autoimmune disease. We barely scratched the surface and we will continue to examine the women's health gap regarding these conditions. Look for upcoming episodes from Dr. Maté and Rebecca Price. You can follow our show wherever you get your podcast so you can get notified each time a new episode is available and you can send us an email at mistreatedpodcast.org.

This episode was produced by Chantel Dmer and me. The Mistreated team includes coordinating producer Matthew Omar, Max Tussy and Ricardo Diaz on camera with support from Diego Garcia. Editing done by Edwin Jansen. Motion graphics by Aush Madam Sherivar. Teleprompting by Christy Mloud. Production support by TVO's digital media team. And thanks to our studio crew here at TVO. Lorie F is the executive producer of digital at TVO. Vanessa Case is vice president of media for TVO. I'm Nam Kiwanuka.