Meghan O' Rourke on the invisible kingdom of chronic illness
The Wintering Sessions with Katherine May:
Meghan O' Rourke on the invisible kingdom of chronic illness
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This week Katherine chats to poet and author Meghan O’ Rourke.
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Listen to the Episode
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Katherine May:
Hello. I'm Katherine May, and welcome to the Wintering Sessions. I've already tried to record this intro once. I normally take you outside for a little walk, but today, it is raining incessantly, and it's grey, and I took the dog with me, and she frankly objected. She did not want to go for a walk today. So my recording was interspersed with her growling at other dogs as we passed, which was a bit embarrassing. She gets so wet blast as she's really wooly.
Katherine May:
Then joggers ran past and cars came past. So I stopped the recording, and I've come back home. Sometimes you need a quiet afternoon anyway. You might be able to hear the washing machine running in the background. I don't know. I've lit some candles all over the house because that cold grey light can be so hard to endure. Sometimes it makes you really miserable.
Katherine May:
I learned in Sweden a couple of weeks ago where I was launching the Swedish version of Wintering that the warmth of candlelight on a grey afternoon does a lot of work. So that's what I've done here, and I've actually had builders in the house all week. They have been restoring my bathroom floor, which unfortunately crumbled and collapsed because there was a leak under the toilet, not very glamorous, but nevertheless true.
Katherine May:
So there's been people in my house all week, and it's just exhausting. I'm so antisocial. I'm really used to my own time and space. I don't like it. So I'm tired and I'm grouchy, and I'm nevertheless delighted to tell you that we have Meghan O'Rourke on the podcast this week talking about her really striking, maybe even life changing for some people book, The Invisible Kingdom.
Katherine May:
As Meghan will tell you, The Invisible Kingdom is all about invisible chronic illness, and when we say invisible, we don't mean invisible to anyone that's looking. We mean invisible to society, and that's because it's often undiagnosable. Meghan has a really specific story that's really interesting that we'll go into in the podcast, but I know loads of people who listen will relate to that, and I did, too, that sense of knowing that something's wrong and not being able to get any acknowledgement or help up and certainly not treatment for that.
Katherine May:
We talked a lot about fatigue. I have suffered from serious fatigue at many points in my life. It's really common for autistic people. I do a lot of work now to stave it off. It's quite interesting to me sometimes that I forget to make that effort. I begin to take it for granted that I'm not tired and forget that that's because I have loads of stuff in place, and when that happens, it visits me really quickly, and it visits me in ways that really surprise me.
Katherine May:
This week, it really has, and things go for me like I lose the power of speech. I begin to feel like my words are disappearing, like my mouth doesn't want to move. When I do speak, I can't finish a sentence. I can't find words, which as you can imagine is really unusual for me. I'm a person who lives by words, and I've been going to bed at 9:00 being absolutely shattered and various other things.
Katherine May:
Anyway, it's really boring hearing people talk about being tired, but I don't think we have a grasp on tiredness in this society, not a common one, anyway, and we tend to see it as shameful and as a failure of energy somehow like you can marshal your own energy and we confuse it with laziness, of course, inevitably because we always find a way to blame people for the worst aspects of their experience.
Katherine May:
I think so many of us will be able to relate through various life experiences, and I think one of the things that's making loads of us tired this week, this month is the global situation that's unfolding around us, the terrible war on Ukraine, the way that after many, many years of watching the news anxiously, we found another thing that renews that fear and terror and sense that our vigilance is required.
Katherine May:
So if you are feeling that this week, I'm sending love. It's okay. You're allowed to feel what you feel. You're not betraying anyone. You're not taking up unnecessary space. Take a rest. You don't have to watch forever and have a little listen to me and Meghan talking about what it means to feel like you are so truly exhausted you can't go on, and also how she found a way through that. I think you'll really enjoy it. Take care. I'll see you the other side.
Katherine May:
Meghan, welcome. Thank you for appearing. No, not appearing, appearing is the wrong word, isn't it? Speaking to me today. Appearing is too grander a thing. I don't think I'm ready for the YouTube channel yet. That seems a bit more visible than I'd prefer.
Meghan O'Rourke:
Well, I'm so happy to be here.
Katherine May:
I was privileged to receive a proof copy of your new book, The Invisible Kingdom. I think, I mean, we share a publisher, but I think they sneakily knew that I was going to relate hard to it because it's about chronic illness, but also it's about the battles that we have to have our illness seen, and then once it's seen, to have it solve because we have the expectation that we can be well again, I suppose.
Meghan O'Rourke:
Yeah, right. We have a lot of time tiny narratives of recovery, and it's harder for us to think about and talk about what it's like to be changed permanently, but not in a narrative way that brings a happy ending, necessarily.
Katherine May:
Yeah, not necessarily a change that you desire. So let's set the scene here because when was it that you began to realise that you were not a well person?
Meghan O'Rourke:
Well, as it turns out, Katherine, this is one of the hardest questions to answer. I say in my book that I got sick gradually and then suddenly, which is the way that Hemingway describes going broke.
Katherine May:
Very similar.
Meghan O'Rourke:
Right. There's something similar about it. So in this very strange way, I had small things happen to me all my life, but what I can say is that in the months after my mother died, and she died in Christmas day of 2008. So in 2009, just started to feel really off, really tired all the time and started seeing doctors in a more active way looking for answers.
Meghan O'Rourke:
Then in 2011, traveled to Vietnam, got a very strange rash on my arm and came home with a fever and really never recovered. So at that point, there was this precipice that I fell off of. So at that point, entering a true roller coaster of ups and downs, at which point it was extremely obvious I was sick.
Meghan O'Rourke:
So I describe it in the book as someone walking slowly into water, who doesn't know how to swim and you're getting deeper and deeper and you know you're moving in, but you're not quite sure, and then all of a sudden the land drops out from under your feet, and that's what it felt like was, "Am I sick? Does everyone feel this way or is something really wrong?"
Katherine May:
"Is this what age feels like?"
Meghan O'Rourke:
"Is this what ageing?" I remember being on Facebook, of all things, and my former boss, it was this period in Facebook where everyone would link various apps. So he had his running app linked to his account and he would say like, "So and so just ran 7.35 miles today in a time of blah, blah, blah." I remember I had the thought, "How can he run that far in your 30s when you just stopped being able to do anything?" So that I think gives a sense of how I acclimated to my illness without knowing that I was ill until I felt it.
Katherine May:
Because the individual symptoms are not necessarily groundbreaking in terms of thinking, "Oh, this is definitely a serious illness." They're tiredness, they're just feeling off and aches, and that kind of thing. It's not like a big lump somewhere or something like that that would tell you that something is seriously awry. So you just roll them into everyday life and keep thinking they're normal for a while.
Meghan O'Rourke:
Absolutely. Yeah. So if so many of our illness stories start with the dramatic finding of a lump, of a scan, of a fall, mine was more that beginning in my 20s I started having strange neurological symptoms that would come and go, a lot of vertigo. I was tired, periodically just incredibly tired. I had night sweats. I had hives. I had, as I say in the book, all these "small thing". I had brain fog periodically. I was sometimes very, very tired, but the nature of my symptoms, exactly as you're saying, where they were systemic and they roamed my body. They also came and went.
Meghan O'Rourke:
So it wasn't a consistent every day this happened. It would seem to come to my head. I would feel really unwell. I would go to the doctor. My labs would look, as it turns out, not perfect, but the doctors didn't really tell me that. From their perspective, they looked pretty good except I was anaemic and I had this one autoimmune marker, but I think it was a real challenge for doctors because I showed up and I was in my 20s. I was running, I had a job, I was an editor at the New Yorker. I had a really busy life and they would say, "Well, you're probably stressed," and they were very kind. I think I was quite lucky, but they would say, "Maybe you need to do meditation, let go of anxiety, learn to live with stress a little more, make sure you get more sleep."
Meghan O'Rourke:
It's not like I was living a life where I rested all the time. So I thought, "Okay. I'm just in my 20s and not taking care of myself." Periodically, I would say to my then boyfriend and now partner, "Is this how everyone feels?" I would Google autoimmune diseases. So I had this, right? It was a quite amorphous experience, and it was really, I always say to actually my writing students that life hands you all these things that actually are quite interesting writing problems, too. I think that the writer in me just thought, "Okay. This is subjectivity, right? This is actually maybe how everyone else feels and maybe I'm just a little more sensitive about it."
Katherine May:
It's so hard to unpack because there's so many different narratives that fall into place about women who are sick, and I think particularly bright young women. There's this assumption that we're a bit neurotic, that we are overdoing it, that we're burning the candle at both ends, that we're over-introspecting and over-interpreting, that we're spending too much time on Google looking up random symptoms that actually are nothing. Were you believed? Were you treated with respect and dignity or did you feel that people were making assumptions about what you were saying?
Meghan O'Rourke:
Well, look, I, in retrospect, know that I had various medical conditions that are pretty verifiable at this point, and that I had them for 15 years before anyone really searched for them. So I would say that my doctors were incredibly kind. I really did have nice doctors, but I say in the book I don't believe that they believed me in the sense that I would go in and I would offer a testimony, "Here's what's going on. Here's what I'm feeling," and the answer always came back with a set of labs that looked close to normal and a, "You're probably stressed," right?
Meghan O'Rourke:
I think the reason for that is exactly as you say, which is that the stereotype of the sickly woman who's diseased that's strictly psychological is one we really live with, right? I say in the book that it's a truth universally acknowledged among the chronically ill that if you're a young woman in possession of vague symptoms like fatigue and pain, you're going to be searching for a doctor who believes you're actually sick, right?
Meghan O'Rourke:
There's a lot of data to back up what you're saying, which is that women, especially younger women, overwhelmingly are labeled hypochondriacs in early stages of illnesses, and actually, in particular with these systemic roaming diseases like autoimmune disease, diseases that are hard to measure, whether it's pain, whether it's something like long COVID that we don't understand very well, whether it's an autoimmune disease, migraines, these diseases that are hard to measure, medicine really struggles with figuring out how to credit the testimony of patients who have them, and it's like if you're a young woman with that, you're really in trouble.
Katherine May:
Yeah. I mean, I've been through this particular mill twice in my life. I had two bouts of really debilitating illness in my teens and then in my mid 20s. I know really so well the reception you get when you take that into a stressed doctor's office.
Meghan O'Rourke:
Yeah, exactly.
Katherine May:
Like you, I had the doubts and the weary like sighing, "Well, I suppose we could call it ME," which was the first label I got, and then the second label was fibromyalgia, but both times both doctors said, "Well, we don't really know what it is, but we'll give it this label because then you'll feel happier," kind of thing like it was this emotional need of mine rather than me being in terrible pain and exhausted and unable to function on a day-to-day basis.
Katherine May:
For me, both times they passed after a couple of years, but the impact on my life was huge, and actually, the shame, I think, is the enduring take home for me that I was ashamed that I could become so sick at such a young age, I think. It felt like a failure, and then the kind of shame that I felt having taken that to medical professionals who couldn't see it on one of their metrics and therefore found it a bit tedious. They couldn't take action and so they didn't find it at all interesting.
Meghan O'Rourke:
Oh, there's so much in what you just said. First, I'm so sorry that you went through it because I really know firsthand what that's like. You'll maybe laugh at this, but I remember a doctor finally just saying, "Well, okay. Let's just say you have a chronic fatigue-like syndrome." He wouldn't even say chronic fatigue syndrome. He was like, "Chronic fatigue-like syndrome, okay, and that's just what it is. I can't really help you."
Katherine May:
Oh, wow. That's [crosstalk 00:16:42]
Meghan O'Rourke:
I was like, "All right. You really don't care," but there's so much I want to linger on for a second in what you just said, I mean, first, you talked about going into a stressed doctor's office, right? One thing I try to do in the book is really point to the system because I think that it's so easy to be frustrated with individual doctors and certainly I was at various points, but we do have, and I think the same is true in the UK, these modern healthcare systems that are set up for acute care and not for chronic illness care. Doctors don't have time. There are really mired and bureaucratic paperwork. In the States, at least, they're really worried about lawsuits, and saying things like "I don't know" to patients is verboten.
Meghan O'Rourke:
So you're absolutely right that a key part of the context is you're walking into a stressed person's very busy day and you have an unsolvable and actually maybe unnamable problem because you're living at the edge of medical knowledge, right? That's just, I think, for doctors, you're right, they lose interest because it's hard probably to be the expert who suddenly doesn't have expertise, and who also all the pressures of bureaucracy are militating against you or being able to sit and offer care and empathy. So there's that.
Katherine May:
Yeah. I think also they get a lot of people through their office who maybe aren't sick, and that drains the sympathy and empathy from their practice. There's so many things, but of course we are sitting here sympathising with people who didn't necessarily sympathise with us.
Meghan O'Rourke:
Sympathise with us, I know, which is ironic, but that's why we're writing this, Katherine.
Katherine May:
She's generous.
Meghan O'Rourke:
That's part of what makes us writers. No. I think that's exactly. Well, I found it really odd and I have to say and I will say, I still find it quite odd that, and in some ways I think it's helpful to refresh the oddness in our minds of a system in which a sick person walks into the very place that's supposed to offer care and is met with a shrug and disbelief.
Meghan O'Rourke:
Sometimes to try to get people to feel the oddness of that, I sometimes say, "Imagine that you walked into a restaurant, a highly regarded restaurant, and you sat down and you said, 'I think I'd like the steak tonight,' and the waiter says, 'Hmm,' and then goes back, and then the chef comes out and says, 'Are you sure? I don't think you do want the steak. There's no evidence here that you actually want the steak. You, in fact, look like a person who wants the salad.'"
Meghan O'Rourke:
It's really interesting, actually, that we are in a system, and it doesn't have to be this way, where the patient's testimony is almost invaluable, I mean, almost not valued at all, right?
Katherine May:
Yeah, yeah.
Meghan O'Rourke:
This is not how medicine always worked. So that's one of the things I try to get at a little bit in my book, but you also talked about shame, and I wanted to go back to that, too, because you really hit the nail in the head. I felt so much shame, and I tried to talk about this in the book just about what it's like in an experiential way, what the lived experience of having a poorly understood illness really is beyond the pain, and the brain fog, and the fatigue.
Meghan O'Rourke:
As anyone who struggled with a chronic condition knows, you're putting so much effort into surviving and getting by, and yet the world isn't validating and recognising that. So it's you who ends up internalising a sense of shame and vulnerability. It's just so ironic to me that it's the sick person who ends up feeling like she's wrong somehow.
Katherine May:
Yeah, and it's just not the illness that gets you in the end. It's the isolation and the sense of falling out of the whole of life, and not being relevant to anyone, and not being comprehensible to anyone. When you talk about being exhausted or fatigue is the medical term is, that means something very different to people like you and I than it does to somebody who hasn't experienced weapons-grade fatigue that just drains everything out of you in a few moments and renders you completely incapable.
Meghan O'Rourke:
Absolutely. We definitely need a different language. Virginia Woolf talks about this so brilliantly in her now long ago essay on being ill where she says, "When you fall in love, you have Shakespeare and Keats' words to articulate your feelings, but if you get a headache, you go to the doctor's office. There's nothing in literature to arm you."
Meghan O'Rourke:
It really is amazing that the very symptoms that characterise the illnesses that you and I are talking about, ME, fibromyalgia, in my case I ended up being diagnosed with Lyme disease that had gone untreated, and also a genetic condition called Ehlers-Danlos syndrome, but the symptoms that most characterise these often are what we call fatigue and brain fog, which, as you say, if you haven't experienced them, those words mean nothing, right?
Meghan O'Rourke:
You think, "Oh, I've had a little brain fog when I was hungover." Well, imagine that multiplied and then unrelenting, right? Then as you say fatigue, it was not fatigue. Fatigue is, "I'm tired. I need to sleep," or "I just ran 20 miles and my body is exhausted." This was like, and I wonder if you felt this, too, I mean, I just remember having this image that I would wake up in the morning and it was like my body had turned to sand, and I had to hold all the sand together through some effort of will that my very cells were just not functioning anymore, exactly as you say.
Katherine May:
Totally relate. Yeah.
Meghan O'Rourke:
Yeah. As you say, it's incredibly lonely. I felt really, really lonely in it. The irony was that the moments when I actually tried to breach the loneliness to say it to another person, I felt worse. That was when I felt shame. When I reached out was when I then felt the most shame, which would just send me into this further cycle of loneliness. I don't know if that was just me-
Katherine May:
It's so grim, yes. I know it so well.
Meghan O'Rourke:
... or whether it was because it was just invisible and there was no way to make it legible. Really, that's why I wrote the book was that I was like, "I have to somehow make this invisible problem visible."
Katherine May:
How were you surviving through this? I mean, were you able to make a living? I mean, one of the, I don't know, the long term effects for me was the inability to make a living like dropping out of a career that I had trained for, that I was unable to perform anymore, and again, the long-term shame that came from that, the sense of financial incompetence.
Meghan O'Rourke:
Oh, absolutely. Well, I racked up quite a lot of credit card debt.
Katherine May:
Yeah, yeah. Me, too.
Meghan O'Rourke:
Yeah. It's funny because people will say, "You seem fine and you were writing this and doing that." So I was both lucky and unlucky. I was lucky in that I had left a career working as an editor and I had started basically adjunct teaching, which I think is in a sense maybe what you were doing, but I had these one year contracts. It was a little better than adjuncting and that I had a real contract and I would have healthcare, but it was these visiting positions mostly at universities near me.
Meghan O'Rourke:
I really loved teaching. It was great, but when I got super sick became almost impossible to teach. So part of the shame was that that I would go. I would try to talk about poetry with my students and it was, again, dredging words up from the muck and just thinking. I remember at one point saying, we were reading a poem about spring and I was like, "We're talking today about," and couldn't think of the word spring, "the season. It comes after fall. There are flowers." My students were like, "Spring?" "Yes."
Katherine May:
You're like, "Well done. You guessed my clues."
Meghan O'Rourke:
Exactly. So I don't know if they experienced that as a form of pedagogy or what, but the thing that was lucky and I was talking about this with another friend who suffered from untreated Lyme disease, I didn't have a job where I was on my feet every day, right? I had a job I could go, I could teach. I remember I would take the train home from Princeton and I would pass out because I had exerted all my energy and I would have a crash afterward as many people do with these kinds of illnesses where if you exert yourself, you have a post-exertional crash. I would be so a conked out that the conductor would have to wake me up at Penn station and say, "Okay. We're here. You have to go." Then I would just hide for three days.
Meghan O'Rourke:
So in the world, it seemed like I was still functioning, but basically, I was making these increasingly tiny forays into the world and then recovering for an entire week, right? So yeah, it had a huge impact on ... My last book came out. My last nonfiction book came out in 2011, and this is coming out in 2022, and a reason for that is that I was really, really sick, right?
Meghan O'Rourke:
There was a period where I think the hardest part, and I wonder if ... I hear this in what you're saying, too, was that not only was this what I had trained for, but writing was my entire identity, right? It was how I cope with challenges. So when my mother was sick, I wrote, right? I wrote poems, I wrote prose. Now suddenly, I was facing this really enormous challenge, and what I precisely could not do was write because cognitively, I was not there.
Katherine May:
Because actually, I mean, although it looks like we sit around all day, writing is a huge cognitive effort. It's tiring.
Meghan O'Rourke:
Oh, yeah, no. Yeah. No, and I mean, it just wasn't there. So there was a period where I told myself, "Okay. You can write one line of poetry a day," and I did actually in my last book of poems, which came out a couple years ago. You'll see a lot of it is written as one line, almost like aphorisms that are disconnected from others because that was really all I could do at the time.
Katherine May:
Wow.
Meghan O'Rourke:
So that was actually one way I knew I was getting better was when I got treated for Lyme disease. Eventually, I took antibiotics and it was an up and down process, but suddenly, I could start writing paragraphs, and I started writing this book, and I thought, "Okay. Something has changed." So yeah, it's a real challenge. I'm really worried right now about the COVID-19 and the tremendous number of people who are being left with long-term effects from this virus.
Katherine May:
Yeah, and what that really means. I don't think we've really absorbed what that will mean for our society and for individuals because that level of dysfunction is hidden currently in our society, and it's huge.
Meghan O'Rourke:
Yeah, and are we going to support those people, right? I mean, you and I struggled alone with this burden, and even now, we're talking about it in terms of, I don't know about you, but I still struggle with what happened and still on an ongoing way as if it's my burden, my story, my problem.
Meghan O'Rourke:
One thing I try to really argue in the book is that this is actually society's problem, and that the loneliness I felt was society's pathology, that we don't know how to credit the testimony of those who don't have highly visible, highly measurable illnesses, that we are really uncomfortable with chronic illness, right? We want our illness narratives to be either you get sick, you battle cancer, and you recover or we even like the stories of death in which there's a spiritual succumbing to-
Katherine May:
There's a sense of an ending.
Meghan O'Rourke:
An ending, right.
Katherine May:
Chronic illness is never ending, and it doesn't change. It's a repeated cycle that doesn't look much different from one month than next. I think it's narratively boring if you-
Meghan O'Rourke:
Right. Totally.
Katherine May:
I think that boredom translates into the health profession. I think they think, "Oh, here comes that person again with exactly the same unsolvable nonsense," frankly.
Meghan O'Rourke:
Right, right, that, "I don't even know if it's real and I'm worried I'll be made a fool of if I believe them and then it turns out to be fake." Yeah. Right. There's the combination of ... I do think that the it never goes away is a real problem. There's this incredible quote by a psychologist or maybe he's a psychiatrist, T. F. Main, where he, I'm going to try to pull it up here, but he just says it. He says, "The best kind of patient is one who from great suffering and danger of life or sanity responds quickly to a treatment that interests his doctor and thereafter remains completely well." It's like you and I were the opposite kind of patient. We did not respond quickly to a treatment, and we did not interest our doctors formidably well.
Katherine May:
No, and I think I would add to that having been, and I'm guessing the same true for you, having been quite a model student at school, the kind of person who did respond quickly to everything and learnt their lessons and progress. I took it as a particular insult. I felt like I was not the kind of person who didn't respond to this stuff, actually. I was a progress-maker.
Meghan O'Rourke:
That's so interesting that you said this because I think I don't quite come out and say this in the book, but I feel like one reason I wrote the book, too, is as a kind of apology to all of those whom I hadn't believed before I got really sick. I remember a friend of mine's mother had ME, CFS, chronic fatigue syndrome or myalgic, encephalomyelitis. I was in high school. She was quite sick. I just thought, "Why didn't she perk up and just get out there?" I really didn't understand, right? I mean, the solipsism of the 15-year-old, who's a good student and still has energy.
Meghan O'Rourke:
I think part of the sting of getting sick was that I was like, "This is isn't supposed to happen to me. What was I thinking? What was I talking about?" So it was an incredibly humanising experience for me. In that sense, the experience of getting sick really, really changed me in ways that I can identify, which is that it completely altered the way I thought about other people's testimony and other people's subjectivity, and it was really humbling to just realise how clueless I had been, but also to have that moment of going to the doctor and just being like, "No, you're supposed to believe me. I'm someone who's excelled."
Katherine May:
"I'm good. I'm credible."
Meghan O'Rourke:
"I'm credible." I know this is something that a lot of, I interviewed a number patients and so many people talk to me about really trying to present themselves as credible to their doctors and how much emotional labour went into that.
Meghan O'Rourke:
There's a funny moment in the book, it's funny to me in a dark way, where I finally saw this really top tier rheumatologist who I had taken months and months to get an appointment with. He met with me. He was so nice. They asked me a million questions. They took everything quite seriously and then he's like, "Okay. I don't think you have an autoimmune disease. I'm going to narrate your case," and he started recording his patient notes in front of me.
Katherine May:
In front of you? Oh, my God.
Meghan O'Rourke:
He began by saying, "Patient in her mid 30s with a pleasing effect ..."
Katherine May:
Oh, that's humbling.
Meghan O'Rourke:
Katherine, my response in the moment, shameful as it is, was that I was like, "Thank God he thinks I have a pleasing affect." I mean, it was so horrible.
Katherine May:
Still got it.
Meghan O'Rourke:
I was like, "Yes!"
Katherine May:
Oh, my God. That's hideous.
Meghan O'Rourke:
It was only months later that I thought, "Wow! That's part of the complexity here," right?
Katherine May:
Those narratives are not neutral.
Katherine May:
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Katherine May:
I want to go into treatment because one of the things that really clarified some thinking for me in your book, that in such a revelatory and helpful way, was the way you talked about that process of seeking what were ever more eccentric and unfounded treatments and how from the outside that might look and how from the inside that was motivated. I wonder if we can talk about that a bit because I totally recognise that pathway as a person that sees themselves as rational and evidence-based but ran out of options within that paradigm very quickly.
Meghan O'Rourke:
Yeah. So I try to characterise myself and my family in the book by just noting I come from this family of Irish-American baby boomers basically, who had full faith in not just medicine, but in experts, right? They're really of that generation. My parents, were authorities, had authority, right? Authority figures had authority, and you really didn't question, I mean, you questioned political authority, from the '70s, but you didn't question medical authority.
Meghan O'Rourke:
So I think that was part of why it took me so long to acknowledge to myself that I was sick because I had really unquestioning faith in my doctors. I thought, "Well, if they say nothing's wrong, nothing's wrong."
Meghan O'Rourke:
So it was only as my life truly was falling apart. I couldn't walk around the block. I failed to recognise a colleague whom I'd known for 10 years. I just had no idea who this person was. I knew I knew him, but I was like, "Why is he in the car with me?" I mean, just truly extreme experiences that made it very clear I was quite sick.
Meghan O'Rourke:
As I went from doctor's office to doctor's office, and as I read more and more, and as I joined patient groups on the internet, often maligned, but in my case, I found them very, very helpful often, as I read-
Katherine May:
Incredibly necessary if you're isolated, yeah.
Meghan O'Rourke:
They're totally crucial, right? As I educated myself, I realised that I really was someone who clearly was at the edge of medical knowledge. What I further realised was that medicine, as distinct from science, but medicine as a practice is necessarily conservative, right?
Katherine May:
Yeah.
Meghan O'Rourke:
It is evidence-based, and as we are seeing in the pandemic illustrated around us, to the frustration of many, it is a slow halting process of starts and stops to acquire that knowledge, right? Some things are believed that turn out to be wrong. Well, that doesn't mean science doesn't work. That's science, right? Science is the process of acquiring and refining knowledge and self-correction, but what was really clear me was that doctors just, conventional Western doctors, were just not set up to help me as I became increasingly desperate to just not even at that point, this is now, I got really sick in 2011, this is now 2013, I'm even sicker than ever. I've been on this rollercoaster now for years.
Meghan O'Rourke:
At that point, I turned to all kinds of alternative and integrative modalities from acupuncture to versions of what Donald Trump suggested coronavirus patients do of injecting.
Katherine May:
Uh-oh. We didn't know that at the time.
Meghan O'Rourke:
I did not put bleach in my veins, but I did do this ozone and ultraviolet light therapy that a lot of doctor ... It's not credited by Western medicine, right? I tried all kinds of things. I tried diets. I tried colloidal silver. I mean, I really just. At a certain point, I made what I still think was a very rational calculation that's often portrayed as credulous.
Katherine May:
It is. It is rational, yeah.
Meghan O'Rourke:
I just realised, "I'm so sick. My life is pretty much gone," which it was, "I need to try things in an experimental way and I have to experiment on myself." I say in the book I wish I could skip parts of that story because I did put myself in the hands of some people I really didn't trust and I let them do things that I was desperate and I did do things with doctors that in retrospect I think, "Well, I should have listen with that distrust regardless of whether the treatments work," just that voice, not being, but I don't see that as a sign that I was credulous. I see that as a sign that I was desperate, and there was a reason.
Katherine May:
Yeah, and you have run out of choices. Yeah.
Meghan O'Rourke:
Run out of options. Something I try to get at in the book that I think is really complicated and it's really hard for us to have a collective discourse around is that a key tenet of conventional Western medicine is fixing an acute problem that gets fixed, right?
Katherine May:
Yes, a permanent cure, yeah, one-off treatment that, yeah.
Meghan O'Rourke:
Right. One thing you really need as a chronically ill patient is actual care, and actual help getting through your day, and actual recognition of the illness. There's a huge amount of data that shows that empathy, and interpersonal warmth, and care, and validation have just almost eerie effects on people's health.
Katherine May:
Yeah, being believed, being naive, being seen.
Meghan O'Rourke:
Being believed, and touched, and beauty, I mean, that these things really actually matter in a material way to a person's health. So for me, something like acupuncture, I had a wonderful acupuncturist whom I trusted, not only is there data suggesting it really helps, but just the very ritualistic experience of going to visit her, having her care so much, and having her touch my wrist and take my pulse and show interest and believe me had such a profound effect on my ability to persevere, separate from what other corporeal effects it had, let's say. So I just wanted to say that, and it's really hard for us to talk about then I think that often gets left out of the discourse of evidence-based medicine is that, again, when you're chronically ill, you need a way of living, too, right?
Katherine May:
Yeah. It was something I really responded to in the book because, actually, it clarified for me some of the things that I've tried out that I may be a bit embarrassed to have tried out in the past out of sheer desperation because I finally got my autism diagnosis when I was 39-ish. I can't remember.
Meghan O'Rourke:
Wow.
Katherine May:
After a whole lifetime of, and the exhaustion that I'd experienced now looks just dead like autistic burnout that other autistic people suffer from and that isn't spoken about and is really common within my community, but it has no validated place in mainstream medicine because it hasn't been researched yet because it's not interesting to researchers, and that's the only reason it doesn't exist in the literature.
Meghan O'Rourke:
That's so interesting. No, I mean, really. Whoa. Yeah.
Katherine May:
Definitely, I'd done some fairly eccentric things to try and sort out my weird mental health before then because there was nothing that made an account of it for me in mainstream medicine or psychiatry. I'd gone back and back and back and been rebuffed, actually, and told that I was probably a bit hysterical like, "What am I worrying about?"
Meghan O'Rourke:
Oh, no.
Katherine May:
I'd had other practitioners saying to me, "You must have been abused and you can't remember it," literally coming out loud with that because otherwise, I made no sense to them. I mean, I tried some stuff that was in retrospect weird and embarrassing, but which really just reflected the desperation I felt to be well and to be stable, to feel stable and feel like I was understandable as a person. We don't talk about that stuff very much, but it's a key part of experience. I was thinking about the practitioners that you saw. Do you feel like they were acting in good faith or do you think they knew that their treatments weren't effective? How does that ecosystem run?
Meghan O'Rourke:
You mean among the nonconventional practitioners, the alternative?
Katherine May:
Yeah, and the ones that you ended up not trusting, I guess. Yeah.
Meghan O'Rourke:
Yeah. It's such an interesting question. I think that just as in conventional medicine, there is a true spectrum of good faith to actual bad faith actors in some cases, right? I mean, not hopefully too many. The same is true in alternative of medicine, right? What's different is that we don't have a system of double blind placebo-based trials to check those things and we don't have insurance companies necessarily overseeing and regulating. So I think I saw a range of people. It's impossible for me to know. The person I really distrusted was someone who seemed to need me to need him, right? Do you know what I mean?
Katherine May:
Yeah. We do have a red light there.
Meghan O'Rourke:
That, and he just seemed to need me to be really sick, right? That I just have an instinctual aversion, too, I think, but why, and was he really in bad faith or what his ... Who knows? Right? I really don't know, but certainly, I can say there were enormous number of what are called integrative doctors and also nutritionists and acupuncturists who truly transformed my health and my relationship to my own illness narrative, right?
Meghan O'Rourke:
I credit them with giving me the tools to think of my not like a car that had different parts that were separately breaking down and needed to be fixed, and actually not as a very sick person, not that I was just somehow sickly. I had started to think, "Okay. I'm just sickly. Something's wrong with me."
Katherine May:
Sickly, yeah, which is such a loaded term, and unpack so many meanings. Yeah.
Meghan O'Rourke:
Right. Actually, so many of them were like, "No. Your body is under stress from an infection, and it has done untold things that are affecting different parts of your body, and that's all connected, and while we may never either identify that infection or be able to get rid of it, we can support you as you try to have a life worth living."
Meghan O'Rourke:
So I thought that was, it sounds so obvious now, Katherine, but it was so illuminating and transformative to experience that. So I do take that as this profound act of good faith. I thought a lot about, and I didn't end up doing this in the book, but I sort of allude to it, but there's a chapter about alternative medicine and why people turn to it, and what, and I really thought about, and I would still love to write this piece or have someone write this piece, how could we, I don't know, alternative medicine works on its own terms.
Meghan O'Rourke:
It's much more based on an individual, personalised idea of medicine, which I think is so important for these kinds of systemic illnesses. I don't think you can subject acupuncture to the same kind of clinical trials that you can subject a pharmaceutical drug. That's the whole point, but I did wonder if part of what would help us embrace the positive aspects of integrative and alternative medicine was just more transparency somehow about relative risk of different things, that there could be a rating system. Anyway, this is a conversation for another time, but it's a way of saying-
Katherine May:
A really interesting one, though.
Meghan O'Rourke:
Yeah. I think it's really important that we embrace a more holistic, personalised approach to medicine. I do think conventional medicine will go in that direction. I think it's going to have to because of everything we're learning about the genome and genetics, but yeah.
Katherine May:
I think also one of the things that we've maybe lost in our discourse around medicine at the moment is the entreaties that we used to have really commonly to recuperate, to rest, to stay in bed for a while. I mean, I think a lot of doctors still think we're doing that and we're not maybe. We're rushing back to work and therefore, we're not healing properly and things like that. We need to bring that conversation back in that says, "No. Actually, my expectation is that you're laying on the sofa watching movies for the next two weeks, not that you're feeling about with your laptop, trying to do some work and making everything a lot worse." I don't think we say it out loud, but I actually think the expectation is probably there-
Meghan O'Rourke:
Absolutely, and I think-
Katherine May:
... or maybe it's not. I don't know.
Meghan O'Rourke:
No, Katherine, I think that's absolutely right. This was something I connected to so much in your book, Wintering. It was actually really helpful to read it at a particular moment I read it, which I was recovering from the sickness and my kids were sick and I had Omicron. I was like, "Oh, I've just got to get it all done somehow," and then I was like, "No, I don't. I can just sit here and say, 'This is horrible. It's just exhausting. It's been two years of the pandemic.'"
Meghan O'Rourke:
What you're saying is so important, and it's so important in this moment where as you and I have said long COVID is a major societal risk because the nature of these illnesses is that if you try to push through it, and what I mean by these illnesses are these systemic illnesses, often infection associated, where the body is desperately trying to come back to homeostasis either because there's still an infection there or because your immune system is continuing to react to a perceived infection or for whatever reason.
Meghan O'Rourke:
One of the things that actually helps you get better is resting. One thing I thought a lot about in my book is, and one thing I argue in the book is that these illnesses, autoimmune disease, fibromyalgia, aren't the signature disease of our time because they're precisely exacerbated by late capitalism, right? Not a phrase I try to use in a jargony way, but really to actually get at the sense of ... My husband kept being like, "You should take that word out. It's jargony," but I was like, "No, it's actually really important," because we are all tethered to our devices and to our jobs and to one another.
Meghan O'Rourke:
In the 19th Century, a very different pace meant that you could be quite sick, and maybe you were the, I keep thinking of the aunt upstairs and bruised or my great aunt was very sick and she just always had a room where she would rest and it was okay. I mean, she was in the 20th century, but it wasn't as hard to be sick. I think it's really hard to be sick in the 21st century because-
Katherine May:
Yeah, and to have it truly acknowledged in its full extent, I think.
Meghan O'Rourke:
Yeah. There's no social safety net, and then also, there's just this relentless narrative of pushing through it, and of recovery and of if you push through it, you'll get better, right? We know that model actually doesn't work for ME, CFS or for many patients with long COVID. You actually will exacerbate-
Katherine May:
I mean, does it work for anything? Show me the thing it does work for.
Meghan O'Rourke:
It doesn't work for anything. Well, one wonders, right? Apparently, it works for cardiac rehab.
Katherine May:
Okay. Good.
Meghan O'Rourke:
No. I mean, I talked to doctor and he said, "It really does work for cardiac rehab and broken bones, but it really doesn't work for these systemic illnesses. It really doesn't." I question like you, of course. My whole book about grief, which was my previous book gives the same argument, really. I just repeat myself of this.
Katherine May:
Yeah. We [crosstalk 00:50:57]
Meghan O'Rourke:
We need to take more time, but we really do, and it's worth asking what fear motivates and what desire to occlude. What are we hiding or what are we not wanting to look at when we encourage ourselves to endlessly press forward because I think it is fear that's behind that need to endlessly push onward.
Katherine May:
Oh, absolutely. I think that one of the moments that I loved in your book was when you were finally offered the antibiotic treatment that was clearly the medically researched solution to your problem. Your first instinct was to demur, really, to say "Well, I'm not sure about that at all." Where were you by then that made you feel that way?
Meghan O'Rourke:
So I had finally gotten a diagnosis of tickborne illness. My doctor had said, "Look, you really have evidence of having Lyme disease and another tick borne illness. I'm going to give you antibiotics and really should make you better." I had seen so many doctors who had at that point said, "Oh, I think you have a thyroid problem," which I did have, "and that's going to make you better." Well, it did make me a little better or "I think you have this virus and doing this is going to make you better," that I had just become skeptical.
Meghan O'Rourke:
I had begun to see that every person I saw saw my condition through their own lens, and I was worried that this person who treated a lot of Lyme patients would just have said to me no matter what that I had Lyme disease. I don't actually think that's the case that he would have. I really trust him. He's very careful about that. He does a lot of work to differentiate the different signs and symptoms and lab results, and he had spent hours looking at five years of lab results, but that was my fear.
Meghan O'Rourke:
I also had really absorbed the idea that a toxic modernity was making me sick, including a processed Western diet, a history of taking antibiotics, which had disrupted my gut microbiome. I had done a lot of research into the microbiome, and this was at a moment where the microbiome wasn't everywhere. In the US now you hear about the microbiome. Basically, every other advertisement is about probiotics and microbiome, but at the time, it really wasn't there yet, but I had been very persuaded that the microbiome is at the core of our health. In fact, that's something I talk about a lot in the book as I've now talked to a lot of searchers who are really at the cutting edge of microbiome, and it's really clear that a healthy microbiome is just profoundly important.
Meghan O'Rourke:
So I felt, "Oh, God! I've just done all this work to drink a lot of chicken broth, and I went from being vegetarian to a meat eater just to heal my gut and have a better microbiome," or in my case, that's what it seemed like it took, "and then now just going to take antibiotics with no clear evidence that it's going to work?" That was really scary for me. I think also, Katherine, I was probably scared to find out that I didn't have a tickborne illness, right? I was probably scared that I was going to hope that it would work and then it wouldn't.
Katherine May:
You couldn't face that cycle of hope again.
Meghan O'Rourke:
Right. I think I could not face hope at that point, which still makes me sad, and I still feel that a little bit, but I have to say my husband, who's really rational-minded and very unemotional about these things was just like, "Well, this is very illogical. You've done far weirder things. I think you should just take the antibiotics. You can always drink some bone broth again later."
Meghan O'Rourke:
So with his very unemotional encouragement, I thought, "Okay. There's a logic to that. I can do that," and then within five days, it was clear that the antibiotics were working, and I went from being bedridden to being able to take a three-mile run.
Katherine May:
It's extraordinary, isn't it?
Meghan O'Rourke:
I was not breaking any land records, but it was just an undeniable change. Since I'd been offered so many solutions before that hadn't worked, I didn't believe that it could possibly be placebo.
Katherine May:
It's incredible, isn't it?
Meghan O'Rourke:
Because you get into this cycle of second guessing everything, right? So anytime something happened I would think, "Well, is this placebo?" or "Is this real?" or "Is this just the natural ebb and flow of illness?" but this was just a thing apart. It was really clear, but it means that I then found myself being in the position of being this evidence-based person with Lyme disease that I don't have a CDC positive for, center for disease control positive for. I have these amorphous test results.
Meghan O'Rourke:
So I'm now, Katherine, that person who goes to doctors and says, "I have late stage Lyme disease that hasn't been fully eradicated," and I'm put in the position of being, by virtue of a condition that I'm pretty sure is real, I'm in the position of being someone on the margins.
Katherine May:
So you still sound big "one of those people" basically to certain practitioners.
Meghan O'Rourke:
Yeah. Absolutely. No, and I always have to decide, "Do I out myself to this person, to this doctor?" No, and I had a doctor clearly flipped on me recently where I said one thing too many and she just went, "Mm," and it was a doctor I really liked, but now I'm not sure.
Katherine May:
Oh, my. Oh, you should telling people you're autistic, seriously. That flips people very quickly.
Meghan O'Rourke:
Does it?
Katherine May:
Oh, yes, certain people.
Meghan O'Rourke:
I'm curious. I do have one question for you, which when you were talking earlier about the burden and the fatigue and the trying different treatments, was it partly the need for finding a narrative for yourself that was exhausting?
Katherine May:
Yeah. It's everything, an account of yourself because when I was growing up, there was no possibility that I've ever got an autism diagnosis when I was a child because actually, most people thought that autism was only something that affected boys.
Meghan O'Rourke:
Boys, exactly.
Katherine May:
I was from a working class family. We didn't have access to private assessments, which is the only way that girls and women got an assessment for a long time. There was nothing in culture that would've pointed us in that direction either. So like loads of young women, I grew up thinking I was literally an alien, literally considering I was the same kind of human being as other people because my responses to everything felt so profoundly different, and I could tell, and it was a bit like, you'll understand this, I couldn't get it across to people how strongly I was convinced that I was different, and I was. I was of a different neurotype, but I didn't have a way to make an account of that.
Katherine May:
So I always thought I was just a bit broken, and learning I was autistic, just honestly, I mean, it wasn't immediate. It's not like it's a magic bullet, but it let me make and build a different narrative about myself and it let me meet my own needs in a way that I wasn't doing before. That narrative is everything. I think the people that scoff at that just haven't experienced it yet, the need to be believed and understood.
Meghan O'Rourke:
Oh, absolutely, a thousand percent. I remember a friend sent me early on, "Why are you in search of a diagnosis? Sometimes diagnosis are just restrictive and categorising," and I thought about it a lot, and diagnosis has the Greek word to know built into it. I think what I hear in what you're saying, what I relate to is that a diagnosis isn't the end of a condition, and it's not the full parameters of it, but it is a tool, I think, for building a narrative of your own, and it's actually quite freeing in that way because you start to be able to make yourself legible to other people.
Meghan O'Rourke:
It turns out that to be sick certainly is not an individual experience. It's a social experience, that your sickness needs to be reflected back, in my case. I'm not talking about being autistic. I'm saying my own illness.
Katherine May:
No, but it is exactly the same. It's exactly the same.
Meghan O'Rourke:
We need social recognition of our differences, for sure. Yeah.
Katherine May:
The first time I went online and said I'm autistic and a couple of my followers said, "Oh, that's funny. I am, too."
Meghan O'Rourke:
Oh, wow.
Katherine May:
That was the start of a thing for me. I'm actually meeting other people who were just like me and whose responses were exactly the same to the world. It was like this unleashing of magic, honestly. I can't state it strongly enough how-
Meghan O'Rourke:
I totally connect to that.
Katherine May:
Oh, Meghan. I could talk to you forever. Thank you. This has been such a great conversation.
Meghan O'Rourke:
I know.
Katherine May:
Thank you so much for being patient.
Meghan O'Rourke:
Thank you so much for having me. It's been such a pleasure.
Katherine May:
I just want to keep talking.
Meghan O'Rourke:
I know. Well, hopefully, we'll get to do it again, Katherine. I really hope.
Katherine May:
Oh, yeah. I really hope so. Yeah. I'm sure we will, actually. Yeah. It's such an important message and such a lovely book. So congratulations on it. It's not long until it comes out now.
Meghan O'Rourke:
Thank you so much. Yeah, very soon.
Katherine May:
All excited.
Meghan O'Rourke:
Thank you so much. All right. Thanks for having me.
Katherine May:
I've been doing a bit of light cooking this afternoon. I've actually made some chips. I love making homemade chips. It's one of those really pointless things to do. I should say for American listeners, I mean fries. I won't ever stop calling them chips. I've also made some custard, a baked custard for our pudding tonight, and I'm about to make a pavlova for lunch tomorrow. It's something I always do when I'm tired is I cook, just gentle pottering, cooking, nothing too frantic. If I've got some time, though, it's something that I find really relaxing and refreshing. It doesn't demand too much of me as long as I'm feeling up to standing, and it feels like an act of nurture to other people around me, and I love cooking. I love handling food. I love the ingredients. I love tasting it all the way because I've had a good afternoon.
Katherine May:
I think one of the things that struck me listening to this conversation, well, two things, really, I suppose. One is how we often see people making desperate decisions about their health without really appreciating why they have to do that. Some of the things that Meghan did seem a little bit deranged and maybe dangerous, certainly not full of the medical proof that we'd ideally like to follow, but when you're in that position, you get desperate. I think so many people are quietly desperate, and it's really worth tuning into that.
Katherine May:
The other thing that strikes me is how often I'm part of a system that says, "Get out. Walk around a bit. Feel some fresh air," and I know how often that's been really difficult for me to do for various reasons, and I always try to make sure I balance that, but I do think we need to think about whether the way we talk about wellness, the way we talk about good mental health, the way we talk about self-care, however you want to name it, really, and the way we talk about nature and the value of nature, whether that's intersectional enough, whether we're thinking hard enough about what it's like to bring a sick body into the world and how we can still reap some of those benefits without expecting people to be able to do everything that a fit and well person can do.
Katherine May:
I think COVID is going to make us all reflect on that a bit more. Hope it will. Anyway, we're certainly going to see more people with long-term illness in our society, and if we're getting it right, we will be finding ways to help and accommodate them, but I think it starts with all of us, really, all of us paying attention to what the people we know are going through and whether it's invisible. Ah, I quite enjoyed being able to talk about that, actually.
Katherine May:
Thanks everyone for listening. Thanks to my producer, Buddy Peace. Thank you to Meghan Hutchins, who puts everything together. Thank you so much to my Patreons or patrons, I still haven't worked that out, I will do one day, who just bring so much love and enthusiasm into this project, as well as helping keep it running. I hope some of you will consider joining, too. It's a really fun community and I've got some ideas for the future too that we'll be developing soon. So that's great. Thank you to all for listening. Take loads of care, won't you? Wrap up warm against this spring cold and look after yourselves. I'll see you very soon. Bye.
Show Notes
Welcome to the Wintering Sessions with Katherine May.
In a fascinating conversation with Katherine, Meghan talks about the struggles she’s endured (and endures) with chronic illness. As she mentions in the episode, there is an invisible quality to many forms of illness which makes it very hard to navigate and manoeuvre through, and we hear all about the difficulties faced when consulting with doctors, dealing with it in our heads, and living with it in the company of loved ones - but again, as you will have come to know from past episodes - silver linings and positivity floods throughout, and it’s a journey that will fill you with light and goodness.
We talk about:
Getting sick gradually, and then suddenly
The conventional narratives about women who are sick
The lack of healthcare for chronic illness
Doctors’ reluctance to say 'I don’t know' to patients
Feelings of shame
Why pushing through illness doesn’t do us favours
The lost art of recuperation
Links from this episode:
Meghan’s Twitter
Meghan’s Website
Meghan’s work at The New Yorker
Meghan’s poetry - Poetry Foundation
Meghan’s book The Invisible Kingdom
Virgina Woolf: 'On Being Ill'
Please consider supporting the podcast by subscribing to my Patreon where you’ll get episodes a day early (and always ad free) along with bonus episodes and more!
To keep up to date with The Wintering Sessions, follow Katherine on Twitter, Instagram and Substack
For information on Katherine’s online writing courses, including her programme Wintering for Writers, visit True Stories Writing School
Wintering is out now in the UK, and the US.
