Unknown Speaker 0:00
I didn't understand why I got the disease. No one could tell me that. I didn't understand why it was incurable.
Michelle 0:10
I'm so excited that in this episode of The pyjama interviews we're talking with Eleanor click Hahn. She is really someone that I deeply admire her book unwell women is an absolute treasure trove where she has gone and found the silence histories of women who have been unwell throughout the centuries. And she brings them so gently to us. So stay tuned at the end for this week's exciting news. And now let's dive in with Elena. Elena and I found each other actually through Sara Remy, last year's guest at the summit and her book, the ladies handbook for her mysterious illness is extraordinary. And now I'm delighted to share with you Eleanor's work, and another beautiful, powerful book that really helps us navigate illness from a very different perspective. So Eleanor, welcome to the pyjama interview Summit.
Unknown Speaker 1:15
Hi, Rochelle, thank you so much for having me. It's real joy to be here.
Michelle 1:19
I really appreciate it. So the first thing I want to ask you about is would you mind sharing with us your conditions, and how your diagnosis process went?
Unknown Speaker 1:30
Of course. So I have lupus I have systemic lupus erythematosus, which is the most common form of the group of diseases known as lupus. Lupus is an autoimmune disease. And it has many different symptoms can affect almost any part of the body, pretty much except the skeletal system. So all the soft tissues and organs are vulnerable to to the ravages of lupus. And my lupus manifests predominantly at the moment, at least in joint pain. I get lots of other symptoms as well. But my most common symptoms rheumatic joint pain, and I've lived with lupus since 2010. Or at least I've lived with the formal diagnosis of lupus since 2010. I was diagnosed just after I had my second child, my son. And I'd had a very complicated pregnancy with him, where he had a condition that was slowing down his heart. And it's very rare condition. And one of the only reasons that it is caused is by the maternal immune system, literally attacking the foetal heart. And so from then on, as my consultants and doctors were trying to get to the bottom of what was happening in my pregnancy, they discovered that there was this unusual activity in my own immune system.
Michelle 3:05
My goodness, Eleanor, this I just want to acknowledge just in this moment with you what a complex and obviously quite anxious feeling experience that you've been through both with pregnancy within this whole new process layered on top. And I just wanted to come in heart to heart with you and acknowledge that.
Unknown Speaker 3:25
Thank you. That's incredibly kind. I feel sometimes that when health conditions, underlying illnesses, underlying conditions emerge in the context of pregnancy. Sometimes women get forgotten or submerged. Because the focus is on, you know, we must keep the baby safe, and we must make sure that the baby is born healthy and well, which of course, was crucial. But I really felt during that time that the focus was so unnervingly on we must rectify the heart issue with my baby. And really what this meant for my own health, this immune activity, but also the emotional consequences of going through that experience of a very traumatic pregnancy were just sort of pushed away, you know, swept away because it's okay, we're all okay. baby was born healthy. You know? So yes. It's often not acknowledged how difficult that was. So yeah, thank you.
Michelle 4:35
And my experiences as with any diagnosis process, when you're sort of in the midst of it, you're just on the horse and you're just sort of galloping or trying to work out what's happening, but emotionally, it catches up with you in the quiet time. So yeah, I'm very curious then you are diagnosed through that process, but what's that meant for you now?
Unknown Speaker 5:00
It's meant a continual negotiation with accept, I think accepting, being unwell as part of my identity as a meaningful part of my life, because they feel that when I was diagnosed it was these two traumatic events happen sort of back to back. So my pregnancy was really difficult and very monitored and quite frightening. Because I didn't necessarily know that my baby would be born with a healthy and functioning heart. There are lots of uncertainties around what might happen to him. So the pregnancy in and of itself was was really scary. But after my son was born, and thankfully, born with a healthy heart, I started to get really unwell when he was about nine weeks old. So no, he understood what this immune activity in my body was going to then do to me. So I was I knew I was getting ill, I knew it, but I was denying it and denying it because I had this tiny baby, I also had a toddler. I knew something's wrong, you know, when you just you know, the difference between tweaking your shoulder, say, from carrying heavy bags, and something that's really going on inside you, you know? So I had this kind of ominous intuition that something was not right. But I also was struggling with this sense of, Well, if I submit to this, what happens to my baby? What happens to my toddler? Yeah, they need me they're dependent on me, they're dependent on my presence on my body. So by the time I did go to the doctor's, I was really, really unwell. And I probably pushed it too far and should have acted upon this instinct much earlier. But I think the idea of leaving them of going away from them, and you know, going to hospital, for example, was something that I couldn't entertain the possibility of I was so attached to them. So yeah, it was very, very strange to submit an admit and identify with, yes, there are biological immunological processes in my body that mean, I have to live in a way that honours that. So it's been it has been a process years of coming to terms with that.
Michelle 7:45
Yeah. And I think you've opened such an important process that I would love to capture it, and just have a talk about it. So acceptance is, you know, it's part of the process. And it's a process. It's not like bang, diagnosis, bang treatment. Yeah, I've got it. And particularly with chronic illness, because it has so many loops. And for me, it's actually a practice of what I call cultivating acceptance, that it's actually something that you cultivate in the same way, in any relationship, in a partnership. In friendships, you cultivate love, and this relationship with yourself and chronic illness has to be cultivated in acceptance. Because it's a whole loop. Really.
Unknown Speaker 8:41
That's so true. It's, it's like the work of like you just said, the work of loving someone else's work, create a relationship with another person is, is work and it's active. And I think loving oneself is a really important part of cultivating that kind of acceptance, especially with a journey through chronic illness. Which comes, you know, it comes with its own forces, it comes with its own narrative, you can't necessarily control it. And that's really difficult, I think, to come to terms with that first, at least, especially in the aftermath of a diagnosis and in the aftermath of, of that process of entering this kind of new state of what your body means. You know, I think the pregnancy, especially the pregnancy, that culminated in my diagnosis, I really felt like my body wasn't my own. I was having lots of scans I was having for the last half of my pregnancy, foetal cardiology scans. So very long, very cool. via scans, my baby's heart growth scans all these monitoring lots of examinations. And it just felt like okay, this isn't mine, to speak about or to have any ownership of anymore. And that was sort of doubled down upon by the diagnosis, in a sense, because I was then this sort of medical subject that I was this conundrum that doctors were trying to figure out. And I think a lot of what has happened over the last 10, nearly 12 years, is getting that back is really cultivating its perfect word, recourse faith in that sense of ownership and autonomy, and softness.
Michelle 10:44
Yeah. And there's something so deep about identity. And I think this is the perfect way to enter this conversation. Because it's what I think of personally as our story of illness, and society shares with us this story that is all about and particularly for chronic illness. And I would love because your work is so powerful, and I can't wait to speak about your work as well. But touching in with each other on this personal story, that our story of illness often is cultivated by society, like chronic illness is this if you're unwell, if you're ill he's supposed to get well how do we get you well, and in the chronic relationship, that doesn't happen. And so we sort of inherit and inhale this story about illness without any relationship to our identity. And so I'm curious about your reflections on that as well. And norm because it's clearly been such a journey, and you had new mother or, you know, a second child, like you had so many things going on at the same time.
Unknown Speaker 11:59
Yeah, I think that what was really interesting from a sense of galvanising, or establishing my identity in relationship to this state of being unwell was that throughout my 20s, so from when I was about 21, or 22, and at university, I started to get what I now understand that the characteristic symptoms of lupus, so I was suffering from joint pain and swelling in my legs and ankles and knees, especially migraines, sort of nausea, issues with my digestion. And then from that different kinds of mental health issues associated, I think, with being in pain, a lot of the time. But of course, I didn't understand this because I didn't have a narrative around chronic illness. So I sort of thought that my body was malfunctioning that I was broken in a deeper sense that I didn't know how to properly express my emotions. And this was reflected back at me by, sadly, by doctors and healthcare professionals, who I went to see during my 20s Looking for answers that way, I was in so much pain. So I went to different doctors and try to explain that my ankles are so sore that I can't walk to work, and I was, you know, 2122. And they would say, oh, you know, you could you could stand to lose some weight. You're, you're probably drinking too much.
Michelle 13:41
Oh, my gosh,
Unknown Speaker 13:43
you were too how old? Are you again? Oh, 21. Maybe you're still growing? And then of course, on top of that, I got all the very typically female centred dismissive arguments such as it's your hormones, your hormone or your Are you pregnant? Are you sure? One doctor actually said is that, you know, is it possible that attractive young woman such as yourself might be pregnant? And this in and of itself was was a traumatic experience? So for years of trying to try and not necessarily convinced but trying to express something that was frightening and life limiting? And was having a real demonstrable effect on my physical mental health? And just having essentially men laugh at me? Yeah. So the, the idea of identifying with that state was very difficult to come to terms with because once I was diagnosed formally, and once I was referred for specialist care. And I had a clinic but I would go to rec Really, and brilliant consultants and doctors that I can phone up or email, it's almost like I didn't believe it, you know, I didn't believe that I would be cared for and taken seriously. So as well as learning how I personally cultivate that relationship with myself as I'm well, it's also been a negotiation or a renegotiation of how the medical profession, by extension society will see me and react to me, especially as an unwell woman.
Michelle 15:36
Yeah, and I think what you're capturing here, and I'd really love to check in that experience with you, is I was I was 35 when I was diagnosed, but I had clearly had symptoms all through my 20s. And it had actually been, because it was my liver and I had elevated in signs. When I went on the pill, my liver enzymes went out of control, but they're like, oh, just take you off the pill. And that will solve this. And they dropped down, but they're like, Oh, we won't worry about that. But then it got to a point. And it's, I always have this sort of confessional tone when I talk about being diagnosed, because I had dark circles under my eyes at 35, that makeup wouldn't cover. So I went to the GP out of venchi going, and we do something about these. And then I started the diagnosis process. But what you're talking about, in essence, here is what I think of as badass boundaries for women living with chronic illness. Because if you don't have them before you live with chronic illness, you're absolutely going to get them on Route. And we need them. And you know, I'm so thrilled to hear that you found doctors who are treating you well. I've found treatment physicians who now treat me well. But you have to navigate that and boundaries is actually what happens for you. So I'm curious about your experience with that.
Unknown Speaker 17:08
Yeah, that's such an interesting question. And you don't I am, I have to say, I am exceptionally lucky to have the care that I have. And, sadly, that's partly just down to where I live. You know, I live in the south of England, I'm within a jurisdiction of a major London hospital that happens to have a centre of excellence for the care of lupus and allied diseases. So I'm very able to get access to that care. But there are many, many women and people in this country and of course, all over the world who don't have that kind of access, and still struggle to have approximate care or the right kind of care. So yeah, knowledge I'm, I'm so lucky. And I enter a space then where I'm amongst clinicians, and physicians who don't see my disease as the anomaly. They see it as the norm, because that's what they studied. So they have dedicated their practice and their thought to. So I'm not an alien or another. I'm not a mystery anymore. I'm not a sort of puzzle to unravel, I'm now a subject of concern. And, you know, the issue of boundaries is, is so important, because I think when we are chronically ill, we are part of the medical system in, you know, our lives depend on the medical system. Yeah, it's very easy to feel as if we have no boundaries, because it's, I don't know how you feel about this, I'd be interested to know, but I received these letters from my team, with all my bloodwork results on. And there's all these numbers and letters and codes and data. And it's mind from the inside of my body. And I know what some of them are, but I can't read it is like I can read a tiny bit of another language, but I can't build up a picture accurately in my mind of what that means. So it feels as if there's this knowledge, I exist somewhere else as well. So I exist in this medical file somewhere. Well, on the internet now, I will on a computer now but existence instead of notes of clinical observation. And this idea that people other than yourself, have such intimate knowledge about what you are. Yeah. And I think that can easily get confused with one's own sense of who you are.
Michelle 19:56
Yeah, I think this is very Very powerful. So the ways I've learned to navigate that for myself is I always ask for a patient copy. And if there's any pushback, I always ask for it to be sent to me whatever they need. And that took years of just working out how to push and how to say, and what I have found. And it's something that I would just say to every woman listening to us so clearly to that your energy has to back your words. And you can see that I'm in it now, like, I am very clear, I'll have a patient copy, thank you. And then you watch, you know, nurses or people taking it by going, Oh, that's a bit of, you know, paperwork, and your doctor will give you Yes, I'm entitled to a patient copy. And I will have one, please. And so I'm very clean and clear with that. And it really is that you have to take up the space of yourself in this relationship. Absolutely.
Unknown Speaker 21:09
That's really, it's really inspiring to hear you say that to be clean and clear in the room. Because that room for women like us who have sort of learned how to do that, you know, you learn how to exist in that space, and how to articulate your needs, and what you deserve and what your rights are. But I think for especially the people who are maybe at the early stages of that process, going through a diagnostic process, or trying to find answers will be taken seriously, when they have symptoms that they don't understand yet. being clean and clear can be so difficult. And you know, you're relying on this trust, you're sort of hoping that this trust exists between you and your healthcare professional, and they won't make you feel belittled to undermine that they'll give you space to speak. And often you do find someone who will listen. But it can be so difficult. I think if you've got a past medical trauma, to then know that you have rights that you can speak for yourself that you can be, as he say, so brilliantly clean and clear. So I feel like that's a really important part of learning. How to identify how to exist in this kind of strange, almost dual identity of being a medical subject, and, you know, being yourself and maintaining those boundaries.
Michelle 22:48
Yeah, I think the way that I came to it, Eleanor is that I worked out. And, look, it's something that I is foundational in my work, because I think it's so important, and I haven't heard it anywhere else, basically. But I worked out for myself. I am the sovereign person, I am the decision maker. They are my medical advisors. And there was a time where I was bed bound. I was very, very unwell with treatment. I was on steroids. And when I took steroids, I knew that I had this process in myself, where my mind would look at my risks, and it would think, looking in the bath, how long would it take me to bleed out? If I worked out if I slit my wrists? And that process because I had such a deep meditation process. I knew that thought because I was like, Oh, hang on a sec, something's actually wrong here. something's not quite right. And so when it came to being prescribed that drug again, I was very clear that I would not take that drug without a psych consult. And I was so they were shocked that I would even have this opinion, like, I will not take that and they're like, Oh, we can give you any depressants, you know, as like no. And they had a sight to me within 45 minutes, which is the point at which I realised Oh, okay, they're really serious about this treatment. But also in that moment, I got very clear that there were there it's like, for me, the medical people were standing guard at the gate. They were the ones who were, you know, at the front guarding against whatever the chronic illness. D destabilising new deterioration was going to be, but I'm the one who was inside. And that's their job is to stand at the gate, and it's my job to make the decision.
Unknown Speaker 24:59
So much and I'm so sorry, you went through that harrowing experience with your medication. But also, how incredible that you understood your thoughts and your body enough to know to recognise, you know that it was something that was happening to you that you know, this outside thing, this medication. So I'm so sorry you went through that. This is another thing I think we don't talk about enough is the emotional and psychological consequences of not just being unwell but of being medicated.
Michelle 25:40
Absolutely. And then how you navigate that it's like, Is this me? Is this the medication, because that gets blurred. And then when we go to work, like you're sort of navigating, okay, I'm at work, I'm trying to look functional. There's me coping with chronic illness. And there's also me with brain fog or this confusion that I can't follow one thought to the next.
Unknown Speaker 26:08
I get brain fog too. So very, very much relate to you that the brain focus is something that you know, as I throughout this journey with lupus, I think I've seen autoimmune research begin to acknowledge more and more the reality of brain fog as a symptom of autoimmunity, rather than just a consequence of our, of our being unwell or being women or trying to do too much of it. You know, it's not just a social or cultural symptom, but actually something that is a symptom of autoimmunity. And I think that it it feels like it's so confusing to sort of piece through one's memory and kind of put together the meaning of a word or try and search for I always know it's happening to me, because I can't I try and say, you know, a silly word like it's on the mantelpiece and I can't think what the word mantel pieces and I keep saying, it's on the thing on the corner, where the thing is, and you know, it's there, your cognitive ability, and you kind of picking through to make meaning. And I think that brain fog is, you know, something that we definitely don't acknowledge enough of a symptom and consequence of chronic illness and of our medication. Yeah, because it is in many ways. I feel one of the most debilitating symptoms that I suffer because I can feel my selfhood going away a little bit. I can feel this connection that I have to meaning making through words and speech and language. I can see it kind of unbuckled slightly and that's frightening, so frightening thing to feel that happening in one's brain in oneself. But I loved what you said earlier about this image of your caregivers of your medical caregivers is standing century at the gate of your chronic illness and holding back the destabilising forces, and new as the suffering body. Because since the books have been published, often when I've been interviewed for an article or a podcast, my interviewer might ask at the end, what advice if you could give one piece of advice to women who are on this diagnostic journey? Or who are living with chronic illness? What would you say? And I Oh, the piece of advice I always give is, well, I don't really have any advice that is important. Just remember that your body is your own, in whatever circumstance you're in. Your body is always your own, your you. It's yours. And I think if you begin from that sense that this is your sovereign body, then that's at least this strengthening. Yeah, remembrance to have
Michelle 29:10
it attached. Yeah. And it's actually the truth, despite all other potential, you know, places where everybody wants you to convince you differently, you know, and the last thing I want to say on this is this issue of medical compliance, and that's the thing too, is can be in your file. And this sort of thing is like if you're not compliant, which in medical terms is do what we say, often not what we do, do what we say because very few doctors are medically compliant. But that all fits in with that. So what I would love to do now, Illinois is firstly, I just want to really acknowledge from my whole heart, the work that you have done in bringing into the world Old, your beautiful work your book called unwell women. This is a it's a phenomenal piece, it's just, I cannot imagine what you had to go through in all of the archives to make sense of women's history with unwellness. And also recover for us. And this is the part that I'm just I'm so grateful to you for because as I'm reading your book, I'm like, Oh, she's gone and collected the bones of the women. And she's brought them back in sacred process with us. And she has put created her spine and her history and her strength and her advocacy. So my whole heart just wants to thank you on behalf of myself and everyone for this work. And I'm wondering if you might share a little with us about this incredible project? How did this come to be?
Unknown Speaker 31:06
Well, thank you so much, I'm exceptionally moved that you would read it and that you would have such engagement, deep engagement with it. So thank you so much, Michelle. Um, well, women really keen to be the first sort of germ of unwell women was because I was looking for answers about my own condition. And it was just after I'd been diagnosed, and I was at the time of my diagnosis, do my PhD. So I was a historian. My impulse was to look into the past to understand the present moment. And when I was came back from hospital with this diagnosis, and these steroids and these new regimes and new ways to live my life, I also had all these unanswered questions. I didn't understand why I got the disease, no one could tell me that. I didn't understand why it was incurable. I didn't understand particularly why I as a woman was more predisposed to developing this disease than a man or why my pregnancy or the hormones related to that would have caused it. So it seemed to me completely bizarre that in a medical science, I can identify the way that my immune system is attacking the DNA and one of my cells, but it can't tell me why my gender has a bearing on my particular disease pretzels. So this seemed to me extraordinary and I just started to go back into medicines history very tentatively. Looking up all case studies, lupus and trying to sort of stigma or lupus had existed in the medical thinking in the Western medical canon. And I started to kind of uncover descriptions of lupus from say, the late 19th century or, you know, 1950, and I began reading case studies. And so many of these women described very briefly in case studies and age, maybe a marital status, maybe an occupation. They felt like Kindred, kindred spirits to me, because they're experts experiences mirrored mines, so familiarly and intimately, they would often have been in unnamed unknown pain for years before a doctor who happened to have a particular interest in that disease process, met them, looked at what was happening in their body, studied them and tried to treat them so. But yet around the language in these case, studies were many assumptions about gender, many assumptions about women's temperaments, behaviours, personalities. And this is also what I have been through, of course, accused of being doctors accusing me of being unwell because I was a woman rather than unwell because there was a serious disease process inside my body.
Michelle 34:28
Yeah. And that's why it's so interesting to me that you've had this experience, lived experience. And then you've gone and discovered and really unpacked that actually the gender dynamic in this and why we're in this experience together right now. It's amazing, Elon,
Unknown Speaker 34:52
thank you. It was I didn't really know what form it was going to take at first. All I knew was that There was this history of medicine. And it was as much a human and social and cultural history as it was this scientific clinical Biomet biomedical history. And it occurred to me that these women, especially, who were the patients and subjects that these studies, I was looking at their bodies, their suffering, their experiences, produced the knowledge that saved my life, you know, their without their suffering, their resilience, their pain being made available to those physicians who, you know, had turned a keen eye to these kinds of conditions in women. My life might not have been saved, and it was so it just made me think, okay, patients are the creep. This is again, as we say, the suffering bodies, we're the we're the figures from which knowledge is generated from which medical understanding is made. It's made from people. Yeah, made for its mind from their pain, really.
Michelle 36:11
Yeah. And their, their unsaid experience in it. Because obviously, this work progressed. And there's a point at which through the book, you have captured what we do and don't know about the women's experience. But as you're describing that now, like just the way your intellect was exploring it, it just reminds me of this process that feels so true for me. And I know our dear friend, Sarah, that we also know together her experience of as well as being queens of the underworld, because it is an underworld experience, you're not part of the heroic overworld. But you are learning to navigate this underworld, and you've gone into the underworld to find them. And you found them actually, in their horrific experiences there.
Unknown Speaker 37:09
It did feel like that it felt like going, indeed, into an underworld in which, you know, behind every, it's sounds obvious to say, but behind every case study behind every textbook behind every finding, especially, you know, from across the say, the 19th century, when lots of medical progress was made, behind every one of those studies was person who lived and loved and was trying to exist in the world, and felt and endured. And this was so extraordinary to me that I just wanted to kind of find these glimmers of details. I mean, there's one case study in the book that really resonates with me, and I think about a lot and that was a younger woman who was given Vaseline and blood tests to premarital blood test in America in the 40s. To test for syphilis, which was the mandated process and many states at that time. And the Westman test showed up that she was positive that she had syphilis. And she was exceptionally shocked and explained that she hadn't had intercourse. That, you know, there was no way that she could have contracted syphilis. But the test kept coming back positive and the doctors were insistent. So she went through very unnecessary and very painful arsenic treatment, which was the treatment regimen at the time in the mid century. A few years later, there was a big study looking back at women who've been given false positives for syphilis, because the antibodies were very similar to those in lupus. Oh my gosh, the doctors were going back, trying to get in touch with women who had been false positive have received these false positive diagnoses and figuring out actually what they probably have this lupus, gosh, and some of these case studies that were looking back at what had happened to women from the time they received this false positive syphilis diagnosis, to the time they received a conclusive lupus diagnosis with lists of symptoms that would include things like emotional instability or stay in an asylum, psychiatric treatment. One woman had a hysterectomy, one had a pre frontal lobotomy, and this particular woman this this one who received the false positive acid test in the medical report Would it mentioned that she, her fiance broke off the engagement, and she became a recluse because of the shame. And it was stuck, just startling to me that this person who was so unwell with a disease of medicine did not yet understand having to also live with the shame of this diagnosis that at the time was hugely stigmatised. And that was her life seven or eight years before she was treated fairly and cared for and given compassion. So stories like that, where you've got these tiny glimmers like she was a recluse, she was engaged, you know, from that I tried to imagine who these people were. And of course, I can't invent things. It's not a work of fiction, but they did become very real to me. And so I was writing, even with these like, tiny little details.
Michelle 40:56
And I think that's just to give people a feel for the book as well, like, we're right in the depths of the case studies, but the work is actually an arc. So the work that the introduction is just so palatable, and so powerful, like, I just want to, I just want to hand it out to everybody, the introduction to the book, because it's just so gorgeous. And you've captured it so deeply, this relationship between the patriarchy between men's business and not women's business, but women's mental deficiency is almost the flavour of what we're talking about. And so what it is, is that the case studies you from that you have built that that's the foundation on which you build this incredible historical analysis of the experience of women's lives throughout history being unwell, but also the advocacy. And I'm wondering if you might share with us, you know, this is extraordinary to put these two things together, it may have make sense to you, but it's just magical when you see it in the page.
Unknown Speaker 42:06
Thank you so much. Yeah, I realised we dived in to the case studies when the granular details in the book but yeah, as he as he explained beautifully, the book is really a long history, exploring the patriarchal foundations of the Western medical system, and unpacking the roots of gender disparity and medical neglect that have arisen over the centuries from medicine being not just a male dominated practising art, but also a form of power system of power. That has always reflected gender inequality, not just reflected it, but also endorsed and justified it. So that's really the what the book does. And it does that through narrative, history telling. So the, it was really important to me when I was diagnosed, and when I understood that medicine had an agenda. And that it wasn't just me being, you know, hysterical in heavily inverted, inverted commas. It was really important for me to not just think about what that meant, but also how like, how have we got to a point where, in the 21st century, my diagnosis, for example, is being impeded by a sort of set of mythologies about what women's bodies and minds do. It just seems so ridiculous that we were still having to deal with antiquated assumptions about you know, women's default setting is unwell, you know, we're hormonal, we bleed, we are emotional, you know, as if we're always unwell, then nothing that happens to us is serious, right. And that was what it appeared to me. That's what my experience had taught me. So really wanted to unpick where that come from. And it felt as if so much of where that come from, was from medicines insistence on always maintaining this gender status quo in society and culture. Where women are inferior, we're women, exists to reproduce and bear and carry and look after children, where women need to live in their bodies and not in their minds. And of course, there's medicines evolved, it's always reflected the realities of the world as it's changed. But in amongst this history, which can at times feel bleak, and grim and brutal, there are moments of really, really important resistance and challenge and advocacy and part of what I wanted to do was tell the story of medical misogyny and it's origins but also show that challenging this talking back to it, resisting it, re establishing our boundaries, reasserting our sense of self has happened all throughout that history. So actually, it's a much more generative and human and compassionate history when we focus, not just on, say, female physicians who really fought back against the status quo, but also a women who may be have been forgotten at that point in history. But actually were crucial to say, the identification of an auto antibody, you know, their very existence.
Michelle 45:41
And what's interesting to me is, do you know, because I have a background in women's studies as well, it's so such a beautiful education, to have an education in arts and Women's Studies personally, but to discover through your work, that we're not just talking about women getting educated and becoming physicians in the late 1800s, or in the 1900s. After the wars, you actually track this back, like, into the 12th century or so like, this is amazing, and that there was a point at which women were trained. And then they were cut off from being trained for a couple of 100 years.
Unknown Speaker 46:22
Yeah, that's true in in Europe, and especially in Italy, there was a really rich tradition of educating women at the medical schools. But of course, as history changes and shifts, it always comes what is always brought along with that is new diktats about who's allowed to generate and produce knowledge. So very sadly, you know, there was a ban brought about, about the toss of 13th century on women practising as trained licenced physicians. Because, you know, men wanted to keep that knowledge for themselves. They wanted to be the arbiters of that particular kind of knowledge, but also that particular kind of power and influence socially. And I think that physicians, medics across history, have always had it, they tended to exist in privileged positions. But I think just to have that sort of knowledge, that access to the understanding of the human body is also very powerful. And I feel like history, if we look at it through the lens of women's studies, it's always been a constant struggle. So much just for power of claiming power, but having our power taken from us, and trying to find ways to reassert that with that soft power, power. You know, that this is sadly what a bit but history shows us that it's a there's always resistance has always challenged, there's always ways in which knowledge has been reasserted, autonomy has been reestablished. And of course, just because women were exempted from being trained and licenced physicians from practising and publishing, that didn't mean that they were not practising medicine, of course, you know, throughout history, women's knowledge of domestic medicine, that intimate knowledge of this and other bodies. Human life has depended on that, throughout its history, so acutely depended on that sort of carrying labour of just being close to other bodies and knowing what bodies do.
Michelle 48:42
And I think for me, your book in itself, like just to gather all this information? I mean, I don't know l&r I don't know if anybody's done it before. But there's this moment, we are in such an open moment, culturally around chronic illness, like to get the book published. Like, you know, 10 years ago, there weren't any of these books out there. They weren't memoirs, let alone this level of then the next level up from the personal story to the collective story. And I'm just curious for you, or I'm curious about your process, like, how does that go? Then you go to a publisher and say, Okay, this is what I want to do. It's that's
Unknown Speaker 49:26
such a great thing to talk about, because you're right. When I was first diagnosed, there was nothing. There were. No, no, there was no brilliant illness writing. There were no memoirs, there was no open and honest discussion of especially the experience emotional physical experiences, chronic cons, it just wasn't represented and then, you know, I have particular difficult ambivalent feelings about this thing that we call the wellness industry. But with the beginnings of the wellness industry becoming something that was much more prevalent in our lives and in our media, I do think there was a term or more or tendency to be more open and accepting about discussions of body experiences that possibly hadn't existed before. And of course, the reason I'm I'm tentative about the wellness industry is because of course, it's a capitalist project. But there was definitely a moment in which illness experience and the realities of living in compromised marginalised bodies was not something that we had to feel that we didn't talk about or feel shameful or deny, I think there was this sort of shift in the fabric of what it meant to own that, you know, to to own it to have an end, it was gradual, and, of course, that maybe commercialization of sort of bodies and pain made way for that turn of it's a turn about a tonne of attention, right. So there's a tonne of attention, yeah, means that we want these stories. Because one thing, once were, once one person speaks their story, somebody else feels a little bit more empowered to share theirs, and then you start a conversation. And I feel that that's where we are.
Michelle 51:30
Now, and I think, in many ways, and I mean, I think your work does this as well, is that the wellness industry itself has not been kind to women living with chronic illness. And let's just call it for what it is the absolute bullshit that is then propagated if you are living with an illness concluding autoimmune illnesses, like just the ridiculousness of what people say to you and feel licence to say to you, you know, I remember a girlfriend, a very dear friend standing in my kitchen saying, so have you thought about how your thoughts, you know, you attack and critique yourself and how that's manifesting as autoimmune. And just the way then, because I'm all about standing for myself. And I looked at her and said, That is not my paradigm. And that's certainly not something that I would ever critique myself for about having autoimmune. But there's something about reclaiming the space that wellness has taken up for ourselves as a chronic illness community, definitely,
Unknown Speaker 52:36
definitely, I think, wellness, wellness time, the headlamp. And then the unwell the Queen's that the underworld, the unwell women, the unwell people. Within under that, in that light in that new light, were able to tell meaningful stories and felt that there was because of course, you know, the sad thing about the way that publishing works, of course, is it's an industry. So it does reflect trends, moments of interests, pockets of attention, that attend to different social and cultural phenomena. And around the time that I pitched, unwell women, to my now agent, who's wonderful, there was this conversation was really blooming. We were you know, we had huge issues had reached the press, such as the scandal around the vaginal mesh. Yeah,
Michelle 53:33
really, I'm so thrilled. Like, I just so thrilled that you named that because in Australia, that was really actually a consumer organisation took that head on, and spearheaded that. So yes, thank you for mentioning that just in context for us to remember where we are.
Unknown Speaker 53:54
And we've had since huge issues like and then huge the bringing to public attention of huge issues like the vaginal mesh scandal, also brought into light other issues around, you know, the suppression may be of side effects related to hormonal contraceptives or the you know, suppression of clear and unbiased information about hormone replacement therapy. You know, all these from something that happens in the present moment, we begin to uncover and understand other related issues. And it seemed to be what all of these issues distilled down to was medicine as a system of power, not believing and taking seriously women's pains, and women's articulations of what's happening in their body is always what it kind of distilled down to, when unwell women formed itself in my mind is a book. It was that right moment to tell that story. You know, we were we were having conversations in the press, but also we were seeing beautiful Oh, brilliant, extraordinary illness writing, coming into onto the popular bookshelves, you know, in reestablishing illness, this history of illness and women not just as something that we're interested in reading about, but as a meaningful part of our identity to return to what we talked about the start of the conversation. I think that's the first time in history that it's really happened, that Pat green are unwell, are able to live in that truth of that illness and articulate it and express it and stand and say, This onus has given me the opportunity to understand and see the world. And that's incredibly meaningful. Yeah. And that I think, is radical. I think that's a radical moment for us all to live in.
Michelle 55:51
Yeah. And I love the way that you've brought us to this moment of because all of the women that you have uncovered and brought to us have also been radical in their own way as well. And so not only are we just discovering each other, and I think what we're on what I think of as an emerging leadership in this space, actually, that and I see you as one of these women, Eleanor, one of the women who are in this emerging leadership, bringing voice to all of us, but we're all coming together. And I really want to thank you so much for sharing your experience, your vulnerability, your wisdom, your process and your work with us. It really is just gorgeous to be able to meet you and share this time with you.
Unknown Speaker 56:42
Thank you so much. It's, it's It feels wonderful. And it feels incredibly invigorating and energising to be part of conversations like this one with you. Because it does feel and I love that image of Queensland. Well, it does feel like coming out from the underworld and opening up this sort of pocket of time and understanding within the, you know, functioning world within the overworld.
Michelle 57:10
Yep. And,
Unknown Speaker 57:13
you know, LMS can be, especially chronic illness can be so, incredibly destabilising and so painful and so emotionally painful, I mean, swell is physically so isolating. And to have this kind of burgeoning community of thinkers, writers, organisers, advocates, activists within this space feels it's such a privilege to be part of this conversation, as it turns into something that I really feel is like, as you say, like a collective movement.
Michelle 57:50
Yeah. And we're together. And that's the thing like I was diagnosed over 16 years ago, and there was nothing but the sense of communion and togetherness. It's so enriching. And I just want to say, and I know on behalf of both of us, if you are a woman listening to our share here together, our hearts are with you. We are with you. We welcome you, you can follow either of us on Instagram, you can follow both of us and we'll have all of Eleanor's details in the notes as well. But we are here we are taking up some space and we welcome your questions. We welcome your connection we welcome and invite you to come be with us. Because even if you are bed bound in this moment, and you cannot find your way. We are here whispering love to very gently in the most positive way that we can because we've both been there and we know how to be with you in that space. Thanks so much for joining us. If you want to explore connecting and working with me Michelle, you can chat to me at Michelle irving.com.au/cat. And we can book on a time to connect. And stay tuned for next week's episode where we have another gorgeous, magnificent woman sharing with us about how to navigate chronic illness in an empowered way.
Transcribed by https://otter.ai
