A landmark exploration of one of the most consequential and mysterious issues of our time: the rise of chronic illness and autoimmune diseases.
A silent epidemic of chronic illnesses afflicts tens of millions of Americans: these are diseases that are poorly understood, frequently marginalized, and can go undiagnosed and unrecognized altogether. Renowned writer Meghan O’Rourke delivers a revelatory investigation into this elusive category of “invisible” illness that encompasses autoimmune diseases, post-treatment Lyme disease syndrome, and now long COVIDynthesizing the personal and the universal to help all of us through this new frontier.
Drawing on her own medical experiences as well as a decade of interviews with doctors, patients, researchers, and public health experts, O’Rourke traces the history of Western definitions of illness, and reveals how inherited ideas of cause, diagnosis, and treatment have led us to ignore a host of hard-to-understand medical conditions, ones that resist easy description or simple cures. And as America faces this health crisis of extraordinary proportions, the populations most likely to be neglected by our institutions include women, the working class, and people of color.
Blending lyricism and erudition, candor and empathy, O’Rourke brings together her deep and disparate talents and roles as critic, journalist, poet, teacher, and patient, synthesizing the personal and universal into one monumental project arguing for a seismic shift in our approach to disease. The Invisible Kingdom offers hope for the sick, solace and insight for their loved ones, and a radical new understanding of our bodies and our health.
I only read this one because it was a group read for a readathon and I had a feeling it would be very eye opening. I also thought it might have some insights into the world of long COVID which is our current reality. And it was all that and more.
I don’t have the kind of chronic illnesses that the author and millions others suffer from. I do have chronic hypothyroid since the past few years and had hyperthyroidism during my childhood, so I have a small understanding of what it feels like when you have to go from one doctor to the other so that you may get a solution for your issues. But in the author’s case, her various symptoms are debilitating and with no right diagnosis from the myriads of specialists she visits, it’s mentally challenging as well.
While chronicling her years and years of suffering, the author also goes deep into the biology and science of autoimmune diseases, their history in the medical world, a general history of how patients with chronic but unexplainable illnesses have been treated over the years, the tendency to blame the patient as lying or the issues as psychological just because the existing science cannot identify a clear cut diagnosis, and the way the corporate medical and insurance industry has created a healthcare system where the “care” part of it is missing – it’s all about finding solutions but if a solution can’t be found, then gaslight the patients. As a middle class white woman, the author acknowledges that this discrimination increases many fold for BIPOC women.
On the other hand, the author also goes in depth into all the research that she did personally over the years into alternative medical approaches, what other recourses chronic illness patients tried to alleviate their suffering, diving into non western medicinal practices. There is a lot of information in the book, about the medical side, the alternative holistic healthcare approach side, as well as the socioeconomic and political sides and how all of them contribute to the lack of care for chronic illness patients. And like many advocates she interviews, she hopes that a more patient oriented approach could be a future possibility, where a patient is believed when they talk about their suffering, even when existing technology can’t corroborate it with a diagnosis.
Understandably, she reiterates the importance of developing that kind of approach to healthcare as soon as possible because the pandemic has brought to light the many ways chronic illnesses can debilitate daily life in a breadth that has never been seen before. Preliminary observations have shown that Covid infections can ultimately lead to more autoimmune diseases in the long term and just by considering the number of people who have been infected till date and the different ways it is affecting each person – if a very patient focused research and care approach isn’t normalized, it will be devastating to millions. The book isn’t easy to read, can feel repetitive but that’s the nature of the author’s illness, can feel overwhelming because there’s too much information about too many topics in it, but nevertheless, it’s a important issue to read about, especially in a pandemic/ post-pandemic world.