Fresh Take: Sara Hirsh Bordo on Autoimmunity and the Threat to Women's Health

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0:32Heidi Raykeil:Hey, everybody. Welcome to Fresh Take from What Fresh Hell? Laughing in the Face of Motherhood. This is Amy. Today, I'm talking to Sarah Hirsch Bordeaux. She is a 15-time award-winning filmmaker and the founder CEO of Women Rising, which creates films and experiences to empower women and girls. Women Rising was named one of the most innovative, interesting, and purpose-driven women-led Startups to Watch by Inc. Magazine. Sarah previously held positions in media and entertainment, including Executive Director of Interactive Marketing at Paramount Pictures. She is Aunt Sissy to 11 nieces and nephews and Godmother Sarah to three godchildren.

1:13Heidi Raykeil:Today, we're going to be talking about Sarah's new book, Autoimmunity and the Good Girls, How Permission to Put Ourselves First Has the Power to Keep Us Well. Welcome, Sarah. Thank you so much for having me, Amy. You are reminding me of my grandmother today, my very beloved grandmother, because I called her grandma, but she was to our enormous Irish Catholic family, Aunt Sissy. Aunt Sissy to like 45 other people. No kidding. Oh, my gosh. Well, let's invite her in today to speak through one of us. Yeah, exactly. And Sissy was a wonderful woman and a sufferer of arthritis from a surprisingly early age.

1:53Heidi Raykeil:So this I wish this book had existed when she was my age. Let's put it that way. Well, I wish that this work, whether it came from me or someone else, existed when my grandmothers were here, too. So, Sarah, let's start at the very beginning. For people who are not familiar with the term, what is autoimmunity? Autoimmunity is essentially a class of diseases that is anywhere between 130 and about 150 on record as of now. What they have in common is there isn't a cure for a single one. Some that a lot of women must have heard of or might have had in their own life, whether it's a diagnosis that they have been given or someone in their family or friends.

2:36Hashimoto's, which is what I have, which is underactive thyroid. celiac disease, rheumatoid arthritis, fibromyalgia, Graves, vitiligo, ulcerative colitis, and the list goes on. What they all have in common is it basically means that the body is in essence at war with itself. The immune system can't recognize what is a healthy cell versus an unhealthy cell. And so what happens is that the immune system, because the immune system is enabled to recognize itself, it begins to attack itself.

3:13Heidi Raykeil:It's my understanding that this is a process that sometimes is useful. You have a bacteria, a virus, your immune system goes to work attacking the invader. There is no benign form of autoimmunity. If your body's turning on itself, it's always this disease or disorder. That's right. The immune system is by nature designed to attack something that is of danger and to, in essence, right the ship. But with autoimmunity, we, in essence, have an immune system that no longer is able to recognize itself. These conditions, they can be very serious things like Hodgkin's lymphoma, and they can be less serious but very bothersome things like Raynaud's phenomenon, which I have, which is if the temperature dips below, say, 60 degrees Fahrenheit, I need to have gloves or hand warmers with me because my fingers will turn completely white.

4:04Heidi Raykeil:Yes, I have multiple friends with that. That's a very common women's thing. And you think of it as like, it's just this little bothersome thing. Or I have, I mean, I have several autoimmune things that kind of go together. But there's a spectrum between very serious like lupus and more bothersome like psoriasis. That's right. But all of them have this unsettling thing of your body is attacking itself and you are not in control of process that is happening to you, even though it is you. That's exactly right. And for me, what I found, so as you said at the top, I'm a documentary filmmaker and a storyteller by nature, and I've been in the women and girls space now for about 15 years.

4:42But for me, I was diagnosed with an autoimmune when I was 30 years old. And I just found myself, Amy, noticing that the women around me that were also being diagnosed, we had a couple things in common. we were either the eldest or the only daughters in our family, or we grew up as the caretaker in our family. And I found that fascinating. I didn't really do anything with that kind of hunch, if you will, right at the top for a few years. But I had a feeling that I would maybe test it out to see if that trend was happening outside of my intimate circle. So I did a survey amongst 300 women that were in the Women Rising network and 70 % of the women that were diagnosed with an autoimmune condition were either the eldest or the only daughter in their family.

5:35And you thought, huh, that's weird. I thought, I think I almost found it a little bit of a validation instead of something that was pesky or weird. If there isn't a cure for a single one and 80 % of all the diagnoses in an autoimmune condition across the country is in a woman's body and there isn't a cure for any of them, then whether it's a doctor or a researcher from the CDC to Harvard to Stanford, everyone is just looking for what are the contributing factors that might be at play here. So for me as a storyteller, I'm always thinking of what's the story that's being told here? I found it fascinating that if my body has turned on itself because it can't recognize itself, then what's the story that might be at play behind that?

6:28Heidi Raykeil:And there are other risk factors for developing an autoimmune disorder, like having Epstein-Barr, having COVID. I have vitiligo, which is another autoimmune disorder. Well, we'll talk about it more later, why that might have happened. But it did happen after I got a very early version of COVID in the spring of 2020. Having a relative who has an autoimmune disease means you are more likely to have one. And having an autoimmune disease already, it makes it more likely that you're going to get a third. But way above all of these is this tendency for it to be female. That is acknowledged to be true in medical science.

7:04Heidi Raykeil:Yes. But they're poorly understood. They're under-researched. They're not taken seriously. And like I said, some of them are bothersome. Some of them are very serious. And that's weird. It's all women. Just sort of put to the side. And so I'm so struck that you, as a filmmaker, use your platform because your filmmaking platform was to center women's stories, that you use that platform to look into this because you weren't finding those answers anywhere else. That's exactly right. I am very curious by nature. I've been in the documentary space for now about 15 years. I love to ask why. I think a lot of us are that way, especially if we're told something that feels like we've been given a life sentence.

7:50That's a scary place to be. When you're told that you have a diagnosis and then you're told that there isn't a cure for it, but we'll manage it, right? I think that in a time when society has never put so much on women in the history of humanity, and in a time when our plates, especially mom's plates, have never been more full, I just started peeling back the layers of not only my own health and my own health timeline, but also the women around me. When were we getting sick? What were the things that we had in common. And so I've decided to take that 70 % stat that I shared with you a second ago.

8:33But I knew that as a documentary filmmaker, I wasn't going to be taken seriously unless I, in essence, upped the ante. So I used my own savings from my work, and I funded the first quantitative research in the United States at the intersection of female empowerment and auto immunity in American women. And that was amongst a thousand American women. And once I saw those results, Amy, and those echoes across women like us, that's when the book was pretty much catalyzed.

9:09Heidi Raykeil:So you were able to recreate these results at a larger scale with a control group of women with and without autoimmune disorders, that the women with autoimmune disorders were very likely to be oldest daughter in their family or the only daughter? 63%. And so I hired a research company. I knew that I wasn't going to take that on myself. It would be one more thing that people would be skeptical about coming from a documentary filmmaker. So what I did was, is I hired an outside research company named Proof Insights, and they have done many, many lifestyle studies over the years, worked with them on a questionnaire that really peeled back the layers of the things that we're talking about.

9:56What did we have in common with our girlhoods? What were the family dynamics around us? What were we asked to do that might be a little bit different? Were we growing up too soon? Were we asked to hold too much responsibility? And then how were all of those questions and commonalities playing out in our womanhoods now? And what did all of them have in common?

10:20Heidi Raykeil:So you asked these questions. I pulled some of these questions. You felt forced to grow up before you were truly ready. Do you identify with that statement? Do you identify with you felt your needs and wants mattered to your parents more before your siblings were born? And along with this, on an equal footing were questions about medical history, were questions about family history of illness. And you also pulled in some questions from the ACE questionnaire, which I think our listeners, we've talked about the ACE questionnaire before, but explain that a little bit to us and how that came to be part of this study.

10:51Yeah, the ACE questionnaire stands for adverse childhood experiences. It was commissioned and basically created by two male doctors and scientists who came up with this list of questions that basically got to the point of childhood trauma. And then they were able to discern that certain levels of childhood trauma were causing disease later in life. I've been inspired by the ACE questionnaire for a really, really long time. But I just felt, Amy, that there were experiences that were so specific to being a girl. Those are the questions that you just so kindly brought forward, and there were many more.

11:36But what I really wanted to peel back the layers of, not only questions like the ACE team and the ACE questionnaire brought forward, and it's really the gold standard of childhood trauma. So I wanted to not only include that, but I layered on a few others. So the ACE questionnaire has questions like, did you have enough to eat as a child? Did you grow up in a family that might have had divorce or separation? Were you hit? Was there alcohol and drugs in the family? Questions that we've all been asked and a little more familiar. But I really felt that this layer of this lived experience that girls have had is pretty singular.

12:19And I wanted to build that into the research.

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15:34Heidi Raykeil:Here's why the ace thing matters, because I think we all have come to understand this research was groundbreaking. I think that came out in the 90s, maybe. But we've all come to accept because it is so that if you had an adverse childhood experience, and with each one you have, because some people have several on this list of an incarcerated parent, or as you said, drugs and alcohol in the home, the more of those you have, it shows up 20, 30 years later in cancer and asthma and autoimmune disorders and all sorts of things. And so the mind-body connection, medical science accepts this as so that ACEs childhoods affect your health.

16:12Heidi Raykeil:So you're taking this one step further and saying, yes, being a oldest daughter, being a good girl, to go back to the title of your book, can also adversely affect your health. That's right. I think the first reaction from a lot of people will be like, oh, come on, that's too much. They're not the same that an ace's childhood, even if they accept that. Well, an ace's childhood is actually, in quotes, traumatic, not having enough to eat, or maybe not having enough to eat. That's traumatic. Being the eldest of four kids and you had a babysit for free all the time, that's not the same. And so I want to get into a conversation about trauma with a lowercase t, as you put it.

16:51I'm so grateful you brought this forward because, you know, you and I were talking before you hit record about how women's experiences have been hushed or dismissed or disregarded or silenced or understudied or undervalued for a very, very, very long time. I think that it all goes back to the age-old reference of you're being hysterical. Yes. I don't feel like we're in a time where that's useful anymore. And I believe that the questions that haven't been asked, it's because most of the research has been done by male scientists, male researchers, and the experience of being a girl who has experienced anywhere between two and five environmental conditions with a lowercase t all contribute to what is not my new favorite line of study, which is epigenetics.

17:57Epigenetics has been defined by Harvard as what happens around you environmentally that can turn off or on certain genes in your DNA. What I found fascinating is the high, high percentages of lowercase t trauma in girlhoods. In my study, it's very statistically significant. The women who had experienced feelings of being suppressed, silenced, only loved for what they did instead of loved for just being. I'm telling you right now, the differences between what a girlhood caretaker experienced and what that has done to her health as women is a very different set of truths than a daughter, regardless of birth order, who simply had the space to be free.

18:53Heidi Raykeil:I want to read a quote from Gabor Maté that you put in the book that I think explains this. He says that trauma is what happens within someone as a result of the difficult or hurtful events that befall them. It is not the events themselves. If you constantly had to worry about family members' well-being, the reaction within your body is trauma or can be traumatic. And it doesn't matter that it wasn't what somebody across town experienced. That's not the point. Painful experiences aren't competitive, as you say. I do say that. And Dr. Mate and I are going to actually be talking about why nice girls and why the good girls are getting sick first.

19:33We're going to be doing an Instagram Live, which is really exciting specifically about this. One of the things to really keep in mind is that many of us were raised with a set of permission slips, Amy, that might have been a little bit more limited than those potentially around us that weren't raised with limited permission slips at all. And in my research now, over a thousand women and talking to many, many, many women one-on-one that were also diagnosed, but also young women and women in their 50s and 60s who were raised not to be good, but to just be themselves. And they are in very good health.

20:19Heidi Raykeil:This meant so much to me because I wrote about this and my book, Happy to Help. I developed vitiligo in the very early days of the pandemic. I probably developed it very suddenly, maybe six months after first being diagnosed. It was an incredibly stressful time in literally everyone's life. And in my house, very much so. We were all sick, very sick when there was nothing to do. Hope you don't turn blue. And one of us never really got better. And it was really rough. And then I get vitiligo. I'm so sorry for that experience for your whole family. Thank you. I appreciate that. I did not connect these two things in my head at all.

20:55Heidi Raykeil:The event and then this autoimmune disorder showing up, which is unusual. It's unusual for it to show up in somebody in their 50s for the first time. Went to the specialist and he said, and this is, imagine this, summer of 2021. Have you been under stress recently? Sweet lord. I burst out laughing and I was like, yeah, I have. And he said, well, what kind of stress. I said, well, you know, like the pandemic and everybody at home all the time and we've been ill and it's just, it's been really hard. And he said, no, I don't mean that kind of hard. I mean, hard, like you were in a car accident and went on to explain to me that what had happened to me could not possibly have caused this vitiligo.

21:33Heidi Raykeil:So there must be some incredibly stressful event that I wasn't thinking of because that was, as you say, trauma with a lowercase T. And I knew he was wrong in the moment. I'm like, okay, what does this guy know? But that is the reaction, I think, from the larger world, the things that you're talking about. Growing up with a restricted set of permission slips, as you say, that can't be enough to cause this. But you're here to say that's not true. I'm here to say other doctors are saying it and have been saying it for many years and scientists and the NIH. And I mean, the book is loaded with evidence.

22:07First of all, I'm so irritated on your behalf. it just to get that out i'm so irritated and disappointed on your behalf that you would put your trust faith time need in a physician's hand to validate your pain to be witnessed and collaborate on a solution i have to ask are you still seeing that doctor well it was because

22:35Heidi Raykeil:it was a very good doctor and guess what my vitiligo is in remission so you know lucky me But it was this sort of like, and now your body's turning on you and you're looking at it every time you do anything because it's on your dominant hand and he's crawling up your arm and maybe it'll stop and maybe it won't. Nothing I heard in that visit was reassuring, but now I'm in remission. Well, I'd like to celebrate your remission. Yeah, me too. And may it stay that way as long as humanly possible. Just to sort of stay on that doctor's visit for a minute, because in my research, I really wanted to peel back how feeling like our needs didn't have space as little girls, how our wants didn't really have an opportunity to be heard as little girls, and how prevalent and common it is.

23:27For so many of us to grow up with feeling that we're actually more loved when we need nothing. Right? I mean, hands up. Anybody preach. My research basically asked not only the girlhood questions that you were kind enough to bring forward and for any of your amazing community and listeners, I have actually put not only the survey in the book, as you saw, but I've actually made it available. on the website if you just want to go and take it yourself to be curious about some of these questions and to answer some of them yourself. Because I think that for a very, very long time, again, when research is often in the hands of men who don't have the lived experience we have, we aren't asked these questions.

24:18We're not asking each other these questions. Our family isn't asking these questions, because if they were asking these questions, then it would have likely shaped our girlhoods and womanhoods differently. But we're asking them now. So there you have it, as my grandfather would say. And so the questions and the survey are available on goodgirlsbook.com or autoimmunityandthegoodgirls.com. Both of them will take you to the same place. I'll make sure to put those in the show notes for the episode as well, the links to those. I have woven in so many answers and certainly all of the statistics, but within women that were raised in some layer of girlhood caretaker, it has completely shaped the ways that we are behaving as women.

25:06And some of those might be about how painful and uncomfortable it is to receive care, to receive a compliment, to receive generosity. And your incredible community has heard the episode about receiving and giving and caretaking and different ways of taking care of one another. It all comes down to the stories that we believe. What do we believe? And it's very difficult to receive when you actually don't believe the story that you have permission to receive at all, and that you have the permission to have needs, and that you have the permission to have wants, and have the permission to basically be a human being.

25:52You've just been hardwired with the belief that I'm more loved when I don't need anything. I'm more loved when I'm good. I'm inconvenient when I have needs. And I feel like I'm trouble when I have needs or wants. And I don't want to cause trouble. And I want to stay good. And I want to stay treasured and seen on the outside as easy. Right. And which complicates it. Which absolutely complicates it.