I was a young child the first time I experienced a stabbing vasculitis flare, but it was two decades before doctors believed the excruciating pain was real. It happened in the ER when I was given morphine. Because my pain was so severe, the dopamine effect of the opioid went where it was needed most—to pain rather than pleasure. On morphine, I was perfectly coherent, my words didn’t slur, and doctors chuckled as they said, “Wow, you must really be in pain if you’re not acting dopey!” (Which may explain why fewer than one percent of chronic-pain patients with no history of drug abuse become addicted to opioid pain medication.) When I spoke with Meghan O’Rourke, author of the new book The Invisible Kingdom: Reimagining Chronic Illness, I had no qualms about sharing this anecdote with her. She responded in exactly the way I needed: with genuine empathy and just the right amount of cursing.
O’Rourke, like me, has more than two decades’ experience dealing with debilitating symptoms and disbelieving doctors, and The Invisible Kingdom will resonate with anyone who has gotten sick and been told by doctors that their ailments are “all in their head.” We have different diagnoses, but O’Rourke’s story is my story. And for as many as 50 million people in the United States who live with autoimmune diseases—75 percent of whom are women—it’s likely their story too.
The intersections of gender, chronic illness, and pain have long been a source of feminist inquiry, but O’Rourke, whose 2008 memoir The Long Goodbye chronicled the aftermath of her mother’s death, is bringing autoimmune diseases and chronic illness to the mainstream with a decade’s worth of interviews and meticulous research. As she writes, “The less we understand about a disease or symptom, the more we psychologize, and often stigmatize, it.” This is, for instance, why multiple sclerosis was once believed to be a form of hysteria, a theory that any physical malady in someone with a uterus was simply a manifestation of mental illness.
Yet the myth that women with chronic pain are simply stressed out, or overdramatic, or attention-seeking persists. It’s used to swat away any pain or malady that doctors don’t understand, until our disease, left untreated, progresses so deleteriously that it becomes beyond remedy. O’Rourke points to one way this might be changing: COVID-19, and long COVID in particular, has the potential to change the public perception of chronic illness. We are witnessing in real time just how expansive and diverse an individual’s reaction to a contagion can be. Could COVID-19 be the catalyst for women’s pain—and chronic illness—to finally be taken seriously? Bitch talked with O’Rourke about the gender bias in medicine, the plight of the “invisible” illness, and the heartbreak of having a disease that prevents you from doing something you love.
Tell me more about the connection you make between COVID-19, especially long COVID, and chronic illness. In your book, you explain that sickness is not so much a particular virus or bacteria or life stressor, but how our individual bodies respond to it.
There’s a vanguard of medicine that is trying to complicate the traditional germ theory idea that a virus or bacteria [invades and] affects all people in roughly the same way. Then you either succumb or you get over it. What researchers are starting to understand is that a host of different infections may, in fact, trigger a variety of long-term illness in certain patients, and this has been vividly dramatized during the COVID-19 pandemic, where we’ve seen this extraordinary scope of long COVID.
There’s an increasing body of research that shows the Epstein-Barr Virus, in a genetically susceptible group of people, seems to trigger autoimmune diseases such as lupus, and—as we just found out about in a really big study—multiple sclerosis. COVID-19 is a test case for this new model of infection.
Why is it that doctors are prone to dismissing symptoms and diseases that primarily affect women? So often our illnesses are labeled as “rare,” when they’re really just understudied and underfunded.
I think it comes out of discomfort. Possibly also unconscious bias—and possibly even conscious bias. That autoimmune diseases primarily affect women is one reason that medicine knows less about it. [Young women] are often seen as unreliable testifiers to their own condition. One of the things you’ll see in medical literature is that examples of “problem patients,” as they call them, are almost always women. It was a joke among my chronically-ill friends that, if you were a young woman who had big, supposedly vague symptoms, like fatigue or pain, [you] would be searching for years for a doctor who thought you were actually sick. Almost always, they would say, “Well, are you a little bit stressed? Are you eating right? Are you sleeping right?” It was really hard to get the doctor to focus on the fact that there might be a biological underpinning beyond your own anxiety.
It’s my hope that long COVID is one of the catalysts for women to finally be taken seriously. We are witnessing chronic illness on a scale that we haven’t seen before. There are venerable medical-research centers that are taking long COVID seriously—clinically and from a research perspective—and putting huge resources into trying to help patients and trying to do the research to figure out what is going on in these patients’ bodies. What’s different is that there’s funding in a way there hasn’t been before because of the scope of the pandemic and the problem it poses.
We are witnessing chronic illness on a scale that we haven’t seen before.
As a writer myself, I really appreciate how palpable your descriptions are of trying to write through brain fog and pain—how heartbreaking it can be when your illness takes away your ability to do something you love. Can you talk about the struggle to follow a passion while debilitated by chronic illness?
The hardest part of my illness was that it took what I loved from me. I used to say to one of my doctors that I didn’t care that I was in pain. The thing that undid me was the brain fog and the fatigue, because they subsumed my entire being. They washed away any effort of will that I might have. And so they made it impossible for me to write. That was the loneliest part of the illness and one that I couldn’t communicate to anyone around me. To have your deepest sense of self and the recuperative part of your life taken away from you, even as you also suffered, was something that almost killed me.
Explain the connection between trauma and disease—and the perhaps ill-devised notion that if you just deal with your trauma, the pain and disease will disappear.
There’s interesting evidence that suggests that trauma can have effects on your immune system. Childhood trauma and childhood stress does seem to increase the likelihood of hospitalization with a diagnosed autoimmune disease. There’s something really mysterious and interesting about the fact that things that happen to you can leave an imprint on your immune system. The problem, I think, is that because American culture is so uncomfortable with chronic illness, we still want to reduce illness to something that can be overcome. We often minimize or reduce these pieces of information we have into something oversimplified: “Just deal with your trauma and you’ll get better.” Well, that might not be how it works at all. Once that imprint is there, it’s forever there. How do you undo something?
Yes, and people with autoimmune diseases are so often tasked with “fixing” themselves. As though if I just try yoga or acupuncture or therapy or green juice, I’ll be healed.
One of the things I talk about in the book is the idea of autoimmunity as metaphor. In the most broad terms, an autoimmune disease is when your own immune system—your personalized defense system—instead of attacking pathogens that have come into your body, such as SARS code two or the bacteria that causes stress, [starts attacking] tissue and organs in your own body. A lot of the autoimmune patients I interviewed took that idea of their own personal immune system attacking themselves to be evidence that they were repressing their emotions, or they had married the wrong person, or [they had] somehow failed. In the absence of the kind of understanding we need to have about autoimmune diseases, there’s this real tendency, especially for women—many of them very reflective—to look at their disease as a sign [of] their own need for moral recuperation. In fact, we know the rise of autoimmune disease is an environmental problem. [So we should instead] pause and say, “Something outside me has made me sick.”
Could you talk about the loneliness and lack of empathy for autoimmune disorders and other “invisible illnesses”?
I was really suffering. But my suffering was invisible. And that invisibility meant that my suffering was almost totally unrecognized by others. It made me really lonely. I was really sick, much sicker than I’ve been with things that actually ended up getting a lot more attention—like a rash that covered my body, [which] was annoying but not a big deal. There was no one there to say, “Wow, you are struggling. I’m here for you.” [With invisible illness] there’s no one coming to your bedside, there’s no meal chain organized. There’s just this kind of: “You look fine.”
This interview has been edited and condensed for clarity and length.