What It's Like to Live with an Invisible Illness

​I wrote The Invisible Kingdom because I wanted the millions of people who live with so-called “invisible illnesses” to feel seen and heard. ​I got mysteriously ill in my 20s, experiencing a strange rollercoaster of symptoms that no doctor could identify. It took me, if you can believe it, more than a decade and a half to receive any kind of diagnosis. During that time, I got sicker and sicker, and I also experienced the profound loneliness of questioning my own perceptions: if no one could recognize I was ill, not even my doctors, was it “all in my head”? I didn’t think so and embarked on a quest for answers and understanding. Eventually, I received a diagnosis of more than one autoimmune disease, as well as something known as POTS (postural orthostatic tachycardia syndrome), which is a kind of disorder of the autonomic nervous system. ​

What I found in my decade of being sick is that doctors tended to dismiss my testimony or tell me that my tests looked good and were unable to take at face value my testimony that something really was wrong. I grew curious about the intellectual and cultural history that led us to this moment in which hundreds of thousands of patients with vague symptoms find themselves being dismissed by medical professionals or met with incuriosity. ​The​ lack of recognition from the medical community left me with a lot of questions: How could I feel so sick yet lack a diagnosis? What made my illness so invisible to the medical system—what were some of the social, historical, and medical reasons my testimony was discounted? The book sets out to answer those questions.

The invisibility of my illness was really hard, and writing has helped me process that. I experienced two challenges: the challenge of living with the symptoms, and the challenge of not being seen and heard. The latter is what almost killed me. When doctors told me I seemed fine, I felt my suffering was rendered meaningless. Not only would I never get better, it seemed, but my suffering would not in some small way add to a larger base of human knowledge. And so, I faced an existential problem as well as a medical one. Writing became my solution to that existential problem: I was driven to make a record of my suffering so that it might in some small way bring comfort and meaning to others like me, or to their family members or doctors.

I had to be very careful during the pandemic, mostly because my body was already compromised, and because I already lived with some of the nervous system dysregulation that long COVID seems to feature: POTS, or something quite like it, is common in long COVID, and my doctor told me that in her experience her POTS patients were more likely to find their symptoms significantly worsened after contracting COVID. Since I was already reporting for my book on the myriad ways that infections can trigger long-term illness, from autoimmune disease to myalgic encephalomyelitis/chronic fatigue syndrome, or post-treatment Lyme disease syndrome, I was concerned from early on that the SARS-COV-2 virus might trigger not just acute illness but a lot of chronic illness—that it might have the capability to trigger a mass long-term disabling event, as it in fact now seems to be doing. So from June of 2020, I actually began reporting on long COVID and spent much of my pandemic energy talking to and following patients and researchers as they have sought to understand this condition.

I think the biggest issue facing us is first to recognize the silent epidemic of chronic illness we are living through in the United States and to start to build a more nuanced and informed cultural narrative around chronic illness, reimagining our individualist society as one that values an ethic of caring for one another. I know this is abstract—and big! But I do think that starting by telling urgent stories about the messiness of illness can help. More practically, we need to create a less siloed and more communicative health care system, in which doctors are trained to care for patients who are chronically ill and need empathy and warmth as much as they need medical interventions. (There are startling studies showing how powerful the biological effects of empathy from physicians can be for chronically ill patients.)

As the pandemic continues, it is becoming clear that we have a class of the able-bodied, who want to “move on,” and then we have a class of vulnerable chronically ill people whose voices we tend to dismiss. We see this in the pandemic, in the fight over masking, and in the cruelty shown toward the most vulnerable among us. In the rush to move on, we’re not having enough conversations about the need to make treatments like Paxlovid and Evusheld easily available to all. And we could be implementing a lot of practical changes in how we think about risk mitigation as case levels rise and fall. In this sense, we do need to start by emphasizing and building shared notions of the value of care—which we desperately need and will need all the more as the climate crisis worsens.

Patients really do value medical professionals’ opinions, which is, ironically, one of the reasons there can be tension in the doctor-patient relationship. I found I often craved a deep connection with my physicians. Doctors and health care workers should know that the simple act of witness and recognition has powerful reverberations. Validation can help those of us living with illness feel seen—and this in turn restores some meaning to our experience. Again, this is abstract, but it reverberates powerfully in the lives of those of us trying to figure out how to live with, rather than overcome, illness.