- Dan Connors
The Invisible Kingdom of autoimmune diseases and how we can fight back against them
The Invisible Kingdom: Reimagining Chronic Illness
Meghan O'Rourke 2022
“There is a razor-thin line between trying to find something usefully redemptive in illness and lying to ourselves about the nature of suffering. Until we mourn what is lost in illness—and until we have a medical community that takes seriously the suffering of patients—we should not celebrate what is gained in it.” Heather O'Rourke
In a typical television medical drama show like ER, The Good Doctor, or Chicago Hope, a patient shows up with symptoms at the beginning, the smart doctors figure it out with a few setbacks along the way, and they cheerfully wheel the cured patient out by the end of the show. That's how modern medicine is supposed to work. But it's all a fantasy as we all know.
Doctors and nurses are overworked and burned out, insurance companies pile tons of paperwork on hospitals and patients, and many diseases just don't get figured out in an hour, week, or even years. For every simple infection such as Covid that can be prevented with vaccines and cured with drugs, there is a much more diabolical disease like long Covid that presents with complicated symptoms that don't go away no matter what you do. What can be done then?
Megan O'Rourke shares her difficult and eye-opening journey in her book, The Invisible Kingdom, detailing her struggle with symptoms that doctors couldn't figure out and her long journey through the healthcare system. O'Rourke was a fiction writer and poet before her symptoms erupted in 2012, and this is her first non-fiction book.
Though she claims to have noticed things not quite right as far back as 1997, her journey begins in 2012 with a series of painful shocks, sharp pains, brain fog that kept her from concentrating, and general fatigue that made even simple activities much harder to accomplish. O'Rourke had all kinds of tests done, but they couldn't point to anything concrete other than some thyroid issues. The medicines initially provided to her ended up not helping, and her condition deteriorated in the following years.
Probably the most difficult thing to read here is how patients, especially women, are treated when they present with unexplainable symptoms and difficult, chronic cases. Doctors like to fix things quickly, and when they get stumped, they don't like it. The tendency is to blame the patient and think most of the problems are in their head. Women are seen as more emotional, and women of color are discounted even more by our dysfunctional medical system. If something doesn't fit neatly into what science already believes, then it must be a mental or emotional problem, (and don't forget that most medical studies are done on men and based on their physiology). The typical doctor appointment is only 15 minutes thanks to insurance companies, and complex diseases simply cannot be addressed in that short amount of time.
What starts as a physical problem quickly can become a mental health issue as well when patients fail to come up with a story, explanation, or solution to their situation. They can lose friends, jobs, and hope as they sink into the unexplained that robs them of their vitality. Feeling sick and not being able to explain it is worse than having cancer, which at least has a community, regimen, and possible solutions. O'Rourke was mostly alone in this process, though she had a husband who admirably stuck by her even though he had no idea what to do either.
O'Rourke tells about nine different doctors and therapists she used at one time during her journey. Since specialists don't talk to each other, she spent enormous amounts of time chasing down tests and records and trying to figure out how to pay medical bills. She eventually gave up on traditional medicine, as many women in this situation do, and went to alternative medical practitioners, including integrative doctors that are open to more holistic therapies. After spending tens of thousands of dollars on things like chelation therapy, ozone and uv light therapy, and fecal transplants, she finally found a possible explanation for her many maladies.
Based on some of her abnormal lab tests, one of the integrative doctors recommended a test for Lyme disease. Lyme disease is a rising problem in the US and is transmitted mainly through tick bites. O'Rourke had lived in areas where the ticks were prevalent, but had never noticed the characteristic rash that accompanies Lyme disease. Apparently, the rash doesn't always appear, and the tests for the disease can be inconclusive or falsely positive or negative. By looking at the body tissue, and not just the blood, they found markers for Lyme disease and began an aggressive round of antibiotics to treat it. Within weeks she felt more alive and normal, but she wouldn't exactly say she was cured.
Having survived a journey of over two years worth of unexplained pain and fatigue, O'Rourke was able to not only resume her writing and teaching career, but she fulfilled a life-long desire to have children, giving birth twice shortly after her recovery.
The Invisible Kingdom is ultimately about autoimmune diseases, which include such things as lupus, multiple sclerosis, rheumatoid arthritis, thyroid disease, and long Covid. Our immune systems is what keeps our body healthy when it attacks outsiders and possible disease vectors that enter our body. But for some unknown reason, in some people, the immune system can go tragically wrong, attacking healthy tissue inside the body as if it was a threat from the outside. The scary part is that autoimmune diseases are on the rise, affecting an estimated 50 million Americans (1 in 7), with up to 80% of its victims being women.
Autoimmune diseases are painful, chronic conditions that sometimes are hard to diagnose and recognize. There are many theories about what can cause them, from viruses like Lyme Disease or Covid to chemicals and plastics in the environment to processed foods that make up our diet. One popular theory, the hygiene hypothesis, states that the decline of infectious diseases and fewer germs in our gut and environment has led to our highly evolved immune systems malfunctioning due to a lack of anything to attack. The bottom line is that we just don't know very much about these diseases, and the people showing up with symptoms are being treated poorly by a medical system that doesn't know how to handle them.
Our traditional medical system operates as does a car mechanic. If something breaks down, we fix or replace it. But the human body is not a car. It is a complex system of dozens of factors including our genes, gut, stress levels, immune system, glands, blood, bones, and organs, all tied together by a mind that tries to make sense of it all. In the past the unexplained was written off, but now with artificial intelligence and holistic models, we can go beyond a one-size-fits-all system, hopefully treating each person with dignity, attention and solutions that they need.
O'Rourke ends the book on a positive note, looking at the bright side of the tragic Covid epidemic of 2020-21. Covid got our attention not only because it killed so many, but also because its symptoms were so variable. Some got it and had no symptoms, some stopped breathing, and some felt after-effects for years. Some 15% of Americans are estimated to have had long Covid, now thought to be an an autoimmune response, and some 6% still have it. This large group of people is enough to get the attention of the medical establishment, and research can now proceed that can create a paradigm shift in how autoimmune diseases are diagnosed and treated.
I recommend this book to anybody in the medical field, and to anybody who has had to deal with it from the patient side. Acute care is our system's strong point, but chronic care is where much of the demand will be going into the future. Heather O'Rourke has done a great service by sharing her inspiring story along with her own research into this important topic.
“The medical uncertainty compounds patients' own uncertainty. Because my unwellness did not take the form of a disease I understood, with a clear-cut list of symptoms and a course of treatment, even I at times interpreted it as a series of signs about my very existence. Initially, the illness seemed to be a condition that signified something deeply wrong with me—illness as a kind of semaphore. Without answers, at my most desperate, I came to feel (in some unarticulated way) that if I could just tell the right story about what was happening, I could make myself better. If only I could figure out what the story was, like the child in a fantasy novel who must discover her secret name, I could become myself again.
It took years before I realized that the illness was not just my own; the silence around suffering was our society's pathology.” Heather O'Rourke