Living with complex chronic health conditions is like living in The Invisible Kingdom, according to Meghan O’Rourke’s new bestseller with the same title. O‘Rourke is a journalist, poet, author and the recipient of numerous awards, including a Guggenheim Fellowship, a Radcliffe Fellowship, a Whiting Nonfiction Award, and the May Sarton Poetry Prize, among others. On top of being an outstanding writer, O’Rourke raises awareness for conditions such as Lyme disease, Ehlers-Danlos syndrome, autoimmune conditions, and many more, which she all has herself. With ABILITY Magazine‘s Karina Sturm, O’Rourke talks about her book and what it truly feels like to be residing in The Invisible Kingdom.
Karina Sturm: Good morning, Meghan! It‘s still morning on your end of the world, isn‘t it? So as someone who lives with Ehlers-Danlos syndrome myself, I must ask: Aren‘t you tired this early in the morning? I feel like I am always fatigued, no matter what time it is. (Laughs).
Meghan O‘Rourke: I put my son to bed last night, lay down with him and fell asleep at 8 PM. So I’m feeling amazing. (Laughs).
Sturm: Oh, that sounds so lovely. I am jealous. But maybe we should start by telling our readers a bit about Ehlers-Danlos syndrome since it’s such an unknown illness. And that‘s not the only diagnosis you have, right?
O‘Rourke: I got mysteriously ill in my 20s, and no doctor that I saw at the time recognized that I was sick. I began having a more severe version of the issues I’ve had all my life, for instance, joint and muscle pain and different injuries. I had brain fog, fatigue and a variety of pain for more than a decade, but in my 30s, all these symptoms grew much worse. So I started to piece together a puzzle. It turned out that I had an autoimmune disease: autoimmune thyroiditis. Additionally, I also had Lyme disease that had never been diagnosed. After I got treated for it, I felt much better. However, those were not all. Eventually, I was diagnosed with postural orthostatic tachycardia syndrome (POTS) and with hypermobile Ehlers-Danlos syndrome (hEDS), which was actually the very last diagnosis I received, but it is the one that helped me make sense of symptoms that went way back to my childhood. It was like getting the last piece of a puzzle and suddenly seeing the world more clearly.
Sturm: I’m almost through with your book, and obviously, I can relate to all of what you said about being gaslighted by medical professionals, experiencing gender bias in medicine, and so much more. As you are well aware, these experiences are not uncommon for people, particularly women, with complex conditions; they happen to almost all of us at some point in our diagnostic journey. It took me four years until I found out I had EDS, and along the way were so many traumatic experiences with health care providers. They wouldn’t believe me and instead told me it was all in my head. That‘s all part of your story and your book, The Invisible Kingdom, as well. From your perspective: Why is it so hard to get diagnosed with conditions like Ehlers-Danlos syndrome, Lyme disease, ME/CFS, and so many other complex chronic illnesses?
O‘Rourke: The book uses my story to launch a larger investigation into precisely this question. Why is it so hard for those of us who live with these poorly understood medical conditions to get a diagnosis? And why are we so often stigmatized? Why do we constantly hear this disease is all in your head or caused purely by stress? The book is a quest to answer that question. And the answer is complicated. But some of the reasons I talk about in my book are that modern medicine likes to measure and see, and it struggles to treat anything that it finds hard to measure or hard to see. It‘s also best at acute care and pretty bad at chronic illness care of any kind. Second, medicine has what I call a woman problem. It has a history of gaslighting women and dismissing women’s testimony. And not only does it dismiss women, but it also didn’t study women’s bodies for a long time.
Karina Sturm: Right.
O‘Rourke: So a lot of the research we have is based on biologically male animals, and it turns out that many drugs work differently for women than for men. Take all this, together with a medical system that’s incredibly siloed and fragmented, and you have a disaster. Another fact I talk about in the book is that you can trace a history of medicine stigmatizing diseases it doesn’t understand. Tuberculosis was believed to be a disease of sensitive souls, cancer as a disease of repressed emotions, and even multiple sclerosis was called hysterical paralysis. When medicine can’t measure and treat something, it tends to psychologize it. And as we both know, these conditions are still poorly understood and desperately need funding. And I think in order to get there, we need to start a discourse that points out medicine’s conceptual shortcomings.
Sturm: I wholeheartedly agree. You are pointing out all those issues with the American healthcare system by using your own personal journey as an example. Now, you are sharing a lot of deeply personal details about your life. For example, you are talking about how your husband had a hard time understanding your symptoms. Can you tell me why you decided to share all these intimate parts of your life publicly?
O’Rourke: This was a decision I made early on because I felt that if I wrote the book only as a work of research, some of the urgent realities of being chronically ill would not be clear to readers. My primary goal for the book was to make those of us who live with chronic illnesses feel less alone and feel seen. I had realized that while my story was one in which I felt really lonely, there were actually millions of people out there like me – all of us dealing with different realities. But I knew that we all have one common thread: most of us feel invisible and unheard. So I thought that as a writer, my job was to share the messy realities of living with chronic illness and presenting the full picture in a way that hopefully would come across as a form of active companionship. I wanted to create a book that would be your friend. Your friend would tell you these things.
Sturm: I think you managed this quite well. At least most of the comments I read about your book were very positive. However, there is always this one person that does not like what you have to say, right? As a fellow journalist, I know that you cannot please everyone. Up to this day, I am unsure how to deal with negative feedback that‘s, let‘s say, not very constructive. I saw that one of your readers criticized the mentioning of systemic racism in your book and offered you a fainting couch. Do you feel comments like this are rooted in a lack of experience regarding chronic illness and disability? And how do you react to people like that?
O‘Rourke: I mean, I think it is important to talk about systemic racism. I would be more concerned about a critique that felt valid to me. Of course, certain aspects of the book are stronger than others. You do your best as a writer, especially as a writer with a chronic illness. One thing I have noticed being on Twitter and getting responses to my writing – and this also reinforces what I already knew to be true as a journalist – is that a lot of people just don’t care about chronically ill people. They are happy to write them off and would be fine if we all suffered in the pandemic and more and more of us died. I think you come up against that reality, and it’s a reminder of the challenges that we face every day.
Sturm: Very true. We have unfortunately all seen what society thinks of us during the pandemic, haven‘t we? It was quite heartbreaking and eye-opening to me, and I am still not sure how to deal with the frustration the last two years brought up. However, do you feel there is a way to reach exactly those people and change their minds? As a journalist with a disability who also focuses on the representation of people with disabilities, I have been wondering about this for a while now. Sometimes, it feels like no matter what you say, some people will never hear us. Tell me how you approach this challenge?
O‘Rourke: Look, there’s probably 5 to 10 percent of people you can never reach. But there is a huge number of people who just haven’t yet thought that deeply about chronic illness because they haven’t had to or because it’s abstract and hard to understand. I was one of those people before I got sick. One of my friend’s mothers had ME/CFS, and I was like, “Why can’t she just not be so tired?” I think people need a framework to understand chronic illness. So your work with ABILITY Magazine is very important because it is offering a framework that helps people understand. And the reason we have frameworks and language is to put names and shapes to things so that we’re not constantly explaining every aspect of existence to one another.
I think that the work to do right now, in the middle of what I call a silent epidemic of chronic illness, is to offer that framework, popularize it, and talk about it on TV and in the news. And will there be haters? Yes, there will always be haters, but who knows if they’re even real? And also, you don’t need to persuade every single person in order to create societal change. You just need to get the middle. And so I focus on that.
Sturm: Sadly, I think you are very right, and our community will be much larger very soon. So all we can do is to offer support to those who will join us due to COVID and help them figure out life as a chronically ill person.
Sturm: I know you wrote a big part of the book during the pandemic since you are talking about it in The Invisible Kingdom as well. But when did you start the whole process from the initial idea until you actually finished it? How long did it take, and what challenges did you have to overcome?
O‘Rourke: I began writing in 2013. At the time, all I knew was that I had an autoimmune disease. I began writing the book thinking it was really about autoimmune diseases. But as I was on this quest for answers, it became clear to me that something else was going on. My autoimmune markers would come and go, and yet, I was really sick, even after being treated for autoimmune thyroiditis. In 2014, I was diagnosed with and treated for Lyme disease. I got much better after some period of time taking antibiotics. Basically, the book reflects my own quest to getting answers in real-time.
I didn’t finish writing the book until 2021. So I was very close when the pandemic happened. As the wave of COVID-19 hit America, I remember thinking, “This is alarming because so many people are going to die, but also because it’s likely that there will be some kind of chronic aftereffect of this virus.”
And there’s going to be a battle to get that recognized to get treatment for those people. So in the spring of 2020, I began researching whether people were getting COVID and afterward would not get better. While this was the summer when not much had been written about long COVID, I was talking to people, listening to their stories. I decided to write a long piece for The Atlantic about it and delayed finishing my book until I had wrapped my head around the scope of long COVID, what it really looks like, and how it might or might not change medicine and research. These are all questions I’m still reporting on as a journalist. It was clear that I couldn’t finish the book without talking about long COVID because the book is specifically about chronic conditions that are exacerbated by or triggered by infection. Some autoimmune diseases, ME/CFS, post-treatment Lyme disease syndrome, or chronic conditions that we suspect may be shaped by infection in ways we don’t understand; they are what some researchers call infection-associated conditions. So the short answer is: There was no way to not talk about long COVID. And that delayed the book for a year. During this whole time, I was living as a sick person with bouts of wellness and unwellness. So it took a long time, and I needed to be very patient.
Sturm: Wow! So it took you eight years?! That‘s real determination.
O‘Rourke: Yes, I wrote the book between 2013 and 2021. But there were times I had to take off because I had kids and my dad died, or because I was sick.
Sturm: Now, your book is full of carefully researched facts. How much time did you spend on the research part, for instance, talking to experts?
O‘Rourke: Yeah, I spent a tremendous amount of time. The book began in earnest during the year that I was at the Radcliffe Institute at Harvard. I had a Guggenheim fellowship to do research. So I spent the entire year full-time researching, meeting with people and going to different labs, reading a huge amount about medical history and the history of healthcare in America, and talking to historians at Harvard and MIT. And then, I kept doing that research over the years that followed while I was writing at the same time. The reason I spent a whole year on research was that I needed to have a sense of why these diseases were so hard to diagnose and treat. Of course, I have my own intuitive thoughts about that. However, I really wanted to figure out if what I was seeing was replicable for others. I also spent about a year talking to nearly 100 different people living with illnesses, such as autoimmune diseases and ME/CFS.
Sturm: A hundred people?! So you’re saying that you did a bigger study than most scientists are doing regarding those diseases, which is very impressive.
O‘Rourke: Exactly. I also had a wonderful research assistant at Harvard who helped tremendously.
Sturm: Amazing! So now that you did all this hard work and published The Invisible Kingdom, what do you hope to accomplish with it?
O‘Rourke: I hope that the book brings some company and context. We both are talking from our perspective as two people who are invisibly ill, but hopefully, we can make the millions who are sick feel seen and heard, too, even in a small way. I also hope that relatives of people who are sick, doctors, and healthcare workers, might read the book, and, by virtue of animating one person’s lived experience, it helps them have a little more access to this experience. When I say brain fog, for example, that term just slides past the person who has never experienced it. It’s very hard to convey the lived reality that someone hasn’t experienced themselves, so the book is asking them to slow down and live alongside these illnesses. I’ve heard from sisters, mothers and daughters. One daughter wrote me a beautiful letter about how she now understands her mother’s life completely differently.
Sturm: That’s amazing. I am glad your book inspires people to walk in our shoes. That’s not an easy task. Are there any people that inspire you – personally as someone with a chronic condition, but also professionally as a journalist?
O‘Rourke: Who inspires me? A fellow journalist who inspires me is Ed Yong. I think the work that he has done to bring clarity and context to long COVID is so important. And he didn’t have to do that work. His insistence on this reality and his deep interest in the scientific causes for it and also the cultural reasons for ignoring it feel like a wonderful model for any journalist, whether they have a chronic illness or not. I was lucky enough to become acquaintances with Jennifer Brea, who made a wonderful film called Unrest about her experience with ME/CFS. And she was able to finish that film far before I was able to finish my book. She and Julie Rehmeyer, who wrote a beautiful book called Through the Shadowlands, reminded me that it was possible to do this even when we’re also living with illness.
Sturm: Yeah, Jennifer Brea and Julie Rehmeyer are role models for me as well. It is quite impressive what we can achieve not despite but because of our chronic illnesses. But I know from my own experience that it is not easy to be a journalist/writer/filmmaker with a complex chronic condition and invisible disability. What are the biggest challenges for you?
O‘Rourke: For all of us, self-compassion is really hard, and managing the flares and the reality of illness, alongside the desire to live a life and, in my case, work. I’m lucky that in 2022, now, I’m well enough to work a significant amount of the time. When I was at my sickest, I couldn’t write. The cognitive problems I was having, the brain fog, was so severe that I lost years of my working life. I was able to do little chunks here and there but was very limited. So I will never take for granted the blessing of being able to work. But I still have flares; I still am sick; I still have a lot of medical appointments and lots of medications. I constantly have to try to manage and maintain my cardiovascular system so that the POTS doesn’t get worse. So it’s hard and frustrating, too. In the past few months, I had several wonderful opportunities I couldn’t commit to because I had to spend a fair amount of time taking care of my body in a way that I think an able-bodied person doesn‘t have to. My husband doesn’t have to spend any time taking care of his body, for example.
Karina Sturm: (Chuckles). Yes, I know exactly what you mean.
O‘Rourke: To this day, I think it’s hard for him to understand. I spend several hours a day just maintaining my health. I have to do a certain workout. I have to stretch. There is a whole set of things I have to do.
Sturm: I hear you. Preparing for medical appointments, physical therapy and rest in between: basically, half the day is spent managing my illnesses for me.
O’Rourke: Absolutely right. Traveling to doctors who aren’t right nearby because you have to find those medical professionals who really know how to treat what we have… One of my doctors is three hours away. It’s not like I can just go down the block to any physician.
Sturm: And again, I feel you. For some of my conditions, I have to travel to other countries to see specialists, which means investing a lot of time and money.
O’Rourke: Exactly. I totally get it.
Sturm: I know you do. What advice would you give to other media professionals who may not “get it” (yet)? You know, those professionals who want to write about disability but have no personal connection to the subject?
O’Rourke: Center the voices of those who are disabled. Center the voices of chronically ill people. Listen really closely. I think a lot can be done when we pause and listen and think about how we might feel if these were our experiences. Also, think about the small things, like the details we were just talking about: the amount of time that is spent on the phone with insurances or traveling to the doctor or researching the right treatment options, or the challenges when flying with a wheelchair and how airlines treat you. I mean, just all of that. The textures of everyday life are really important to understanding; what it is really like to live with a disability. And do not patronize us.
Sturm: Thanks so much! All very important points. Now, how do you feel about the current representation of people with disabilities in the media? What needs to change, if anything?
O‘Rourke: (Laughs). Everything.
Sturm: I agree.
O‘Rourke: We need to start by talking differently to children from a very young age about bodies and illnesses and disabilities. I was on a TV show recently, and they were shocked that I talked to my sons about my illness. They were like, “Well, of course, you don’t talk to them.“ And I said, “No, I talk to them about it.” I do. I don’t give them more information than they can handle at any given time, but they know about my conditions. Chloé Cooper Jones‘ new book, Easy Beauty, is a wonderful memoir about ideas of beauty and bodies that is shaped by her having grown up with a disability. She recounts the ways in which people assume she needs more help than she does, in some cases, and in others, ignore when she needs support. Most of all, she captures the way that people tend to see everything about her life through the lens of her disability in reductive and damaging ways. So I think we have to get away from this othering that happens and towards a more nuanced and sophisticated discourse that allows for the variety of human experiences.
Sturm: Thanks so much for this valuable insight. I am so happy you are part of our community! Your work is important for all of us. Speaking of your work, can you give us some spoilers? What‘s next for you? Are you writing a new book? Ehlers-Danlos syndrome
O’Rourke: I‘m writing another piece about long COVID and how it might help people who live with other conditions. But I am also starting to think about a new book; I don’t really know yet exactly what it is, but I think it’s somehow about time.
Sturm: About time? Okay, you need to give me more details. (Laughs).
O‘Rourke: It’s a book about this period in one‘s life where one may have kids or one’s parents are no longer alive: this moment in life where you start to live in the past along with the present. I’m hoping to write a little bit about Ehlers-Danlos syndrome more specifically, too.
Sturm: Oh, I would certainly appreciate that a lot. Thank you! Please keep me posted about it all. Meghan, thank you so much for talking to me today! And thanks for all you do. Talk to you soon.
O‘Rourke: Thanks, Karina! Have a lovely day. Bye!