Ever felt like something was really off with your health, but doctors couldn't figure out what? Like your body was acting up, but all the test results came back normal? Well then, this memoir is for you. The author, Meghan O'Rourke, went through that experience for years - she literally had strange, raised red bumps on her arm, arranged in a circle like Braille and no one could explain what it was. Little did she know, she was starting a long, frustrating journey into the world of poorly understood, chronic illnesses.
O'Rourke’s experience is way more common than you might think. Millions of people are suffering from conditions where their immune system or nervous system goes a little haywire, creating an "invisible illness” that's hard to diagnose, hard to treat, and even harder to make others understand. And yet, this memoir does a great job of breaking it all down. It shows what it feels like to have a body that feels like it's betraying you, to face skepticism from medical professionals, and to have a healthcare system that’s ill-equipped to handle these illnesses that don't seem to fit into any neat boxes.
Let’s step into this invisible kingdom and try to make sense of our bodies.
What Even Is a Disease, Anyway?
Weird question, but that’s where it all starts. We usually think of diseases as foreign invaders - bacteria, viruses or other microbes that attack the body from the outside. Nerds call it the "germ theory" model. Y’know how it goes: find the bug, eliminate it, and you've solved the disease. But that straightforward idea doesn't always work out so neatly. See, there's this whole category of conditions called autoimmune diseases that flips the script. With autoimmune diseases, the enemy is internal - the body's own immune system mistakenly attacks its healthy tissues and organs. There's no obvious microbe to target. Hell, there’s not even a consistent symptom! They bring a mix of ever-changing issues. One week you feel drained and foggy, the next you're full of energy. Are you ill or healthy? Nightmare!!This nightmare was the everyday for O'Rourke. She remembers an incident when her friend Gina emailed to invite her to dinner but wrote, "I'm afraid to cook for you!" What she had wasn't just an illness now; it was an identity! Her condition had morphed from a temporary setback into the defining fact of her existence. She was "the sick friend" now. And yet, her doctors basically said "Oh! It is totally normal. Here’s another pill!" The western medicine and its preference for clear cut diagnosis! Facepalm!! They have actually stigmatized such ambiguous ailments as psychosomatic or "illegitimate." They don't fit the tidy germ paradigm, so therefore they can't be real, right? Tell that to the millions suffering autoimmune disease.The point is, human health is more complex than just the presence or absence of germs. Our physical state is stupid complicated, influenced by genes, the environmental exposures, as well as our personal experiences. Researchers think autoimmune diseases arises from gradual accumulation of stressors over years - the "allostatic load" - that can eventually dysregulate the immune system in vulnerable individuals. Like O’Rourke. So viewing wellness as having an On/Off switch - you're either healthy or sick - is naive. Our bodies are a dynamic ebb and flow influenced by so, so many factors, and not just microbes. You know who had it right? Our ancestors! They embraced this perspective, viewing wellness as a holistic mind-body-environment phenomenon. But us moderns, with our fancy gadgets and all! We messed it up. We prioritized finding single root causes, the core idea behind germ theory, over exploring how multiple factors connect. While...
The Emotional Toll of Chronic Illness
As someone who has struggled with an undiagnosed chronic illness for years, O'Rourke knows all too well how emotionally draining an autoimmune disease can be. Her usual day? Endless doctor's appointments, mountains of medical paperwork, constant tests and treatments with little relief, and the isolation that comes with being constantly unwell. An emotional grindstone, won’t you say?Know what makes this worse? The American healthcare system. Calling it healthcare is practically an insult. O'Rourke was squeezed into 10-15 minute appointments, after waiting for hours. Then there were the never-ending cycle of referrals from one specialist to the next. And so many futile testing! It all ate up about 25% of her time each month. And she still had no definitive answer to what the issue was. With her questions, no wonder she felt like a "heartsink patient" – someone who has unclear symptoms. A doctor’s worst fear sort of person.From there, her mental anguish only intensified as her condition worsened. Intense bee sting-like sensations, unexplained bruising, and whatnot. This one time, she was on a road trip with her partner Jim. At a steep canyon trail, she began overheating, sweating profusely and had to stop frequently to rest. An older couple easily passed them. And there she was; trembling and shaking, because of nothing apparent. She got to the point where she questioned how much longer her mind and body could endure this torture.And then there is the hole it cuts in your pocket. Over $22,000 in one year for appointments, IV therapies, supplements and more! Aka more stress. And without a clear diagnosis, there's no guarantee any of it is truly addressing the root causes. Disappointed, O'Rourke also had a stint with alternative medicine. The unconventional stuff, like herbal drinks and all, to treat the whole person through lifestyle factors like nutrition, exercise and stress management - not just chase symptoms with endless prescriptions. Providers carefully listened and looked at her situation holistically rather than narrowly focusing on tests and metrics. Something that never happened in “mainstream” healthcare. But while alternative medicine seemed like a godsend at first, this holistic approach comes with its own set of headaches. For starters, insurance companies give it the cold shoulder. So, you're left footing the bill, and unsurprisingly, it ain't cheap!And the procedure is basically a full-time job. Suddenly, you're juggling special diets and supplements, and feeling exhausted by all the self-care routines...
The Reality of Autoimmunity
When O'Rourke first began experiencing her symptoms, she naively thought understanding her condition would be straightforward. Man, she couldn’t have been more wrong! Let’s break it down for you. See, our bodies have amazing defenses against germs. Two types work together like a team. Innate immunity is the first line - things like skin, coughs and fever that fight invaders right away. Adaptive immunity is more specialized and memory focused. It has B-cells - they produce antibodies that can disable specific viruses, bacteria or other threats the body has encountered before. It also has T-cells which directly kill infected cells. An autoimmune disease is caused when this defense system goes awry, mistakenly attacking the body's own healthy tissues as if they were foreign invaders. The immune cells see normal cells as the enemy and mount attacks against them, causing inflammation and damage. So far, so good? But, what triggers these errors? Researchers say genes, past infections, environmental toxins, stress or their combo could all play different role in different people. This makes sense - we're all unique, so what harms you may not hurt your friend. But still, our knowledge on it has limits. So, as is typical of humans, we invent stuff to fill in these gaps. For instance, people think there is a deeper meaning for their condition. They look for clues in their life stories, personalities, and stress levels. As if the disease is a metaphor of their inner selves “battling the self". Dramatic, but we all do it. As per O'Rourke, this makes the situation even worse. Such metaphors are TOTALLY misleading. These word pictures are nothing more than the remains of outdated medical terminology. Seeing the diseases as punishment for whatever happened is technically victim blaming. Blaming individuals, instead of looking at all the bigger societal issues that are actually making the mess. And how does society respond? “Think positive! It could be so much worse.” Yes, our mindsets do seem to impact health and changing one's outlook can be useful. But these positive thinking philosophies are too oversimplified. The mind-body connection has limits - an upbeat attitude alone can't cure serious physical diseases. Individual willpower only goes so far against chronic illnesses, you know!Bottom-line, O'Rourke realized science still holds many mysteries. Mysteries that remained, even after many specialists offered their guesses. And more confusion over metal toxicity, electromagnetic problems or other doubtful culprits. This...
The Illusion of Medical Certainty
See, diagnosis is not gospel. It doesn't solve everything and sometimes may not even be accurate. Like O'Rourke, we all crave answers, don't we? That longing for a neat label, a definitive diagnosis to make sense of our suffering. But what happened next with O'Rourke proves diagnosis can sometimes crumble under the weight of reality.
A little backstory first: Heard of Lyme disease? We thought we had it figured out – a simple bacterial infection, easily detectable and treatable with a round of antibiotics. But then, the inconvenient truth emerged: some patients didn't bounce back, their symptoms came back. And thus, the term "chronic Lyme disease" was born. That’s how incomplete our diagnosis remain. How can we trust a diagnosis when the tests meant to confirm it are not always 100% accurate? This is precisely what Dr. Horowitz told O'Rourke. Finally, finally! He gave her a name. He found signs that her past Epstein-Barr virus was acting up again. Reactivation of Epstein-Barr virus is related to Lyme disease. Apparently, she had gotten Lyme disease from a tick bite. But, her test results were contradictory, suggesting a ‘maybe’ Lyme infection. And it went downhill.
Her treatment with antibiotics didn't go smoothly. The medications actually made her symptoms worse at first, causing severe fatigue, brain fog, and times when she even debated suicide. In search of a solution, she traveled to a clinic in England for an experimental fecal transplant. The goal was to restore her gut health after the antibiotics had depleted her microbiome. The clinic explained the process, which essentially involves transplanting stool from a healthy donor to repopulate the gut bacteria. Not surprising, she experienced flu-like side effects initially as her system adjusted to the new gut microbes taking up residence.
After 8 weeks on a special diet, she was finally able to get pregnant with her son - something she had struggled with for years due to her health issues. So yeah, it sorta worked. But it doesn’t always. In fact, her own father's early Hodgkin's lymphoma cancer was initially mistaken for a tick-borne illness because, you guessed it, diagnosis is not always perfect.
So, you see! There is no simple narrative. Illness results from a complicated mix of influences that our current medical knowledge cannot fully untangle yet. Does that mean there’s no way to heal?
Healing
Healing. Such a simple concept, yet it doesn’t come so easily. Just when O'Rourke thought she was healing, some virus struck her and her young son down in the spring of 2017. And before she could relax, she was yet again stuck in the all-too-familiar web of body aches, brain fog, fatigue, and those unsettling electric shock sensations coursing through her legs. Can you imagine the frustration of feeling like you're finally turning a corner, only to be knocked back down by an ‘invisible’ enemy? In between trying to teach, write, and care for her frail, cancer-surviving father and one-year-old son, she was left utterly drained. Again!Then one day, she went to Olympic National Park. Surrounded by that vast, hushed landscape, she could breathe again, reflect on the highs and lows of her gradual two-year journey towards healing, and admit to herself that she wasn't truly "better" yet. And with that confession, she had experienced the healing power of nature. Healing isn't merely a physical process. It requires a sense of calm and rejuvenation that is almost always there when surrounded by nature's grandeur. That’s true healing – a concept that seems to have faded in the age of high-tech hospitals. Have you realized hospitals today are the absolute opposite of this? O'Rourke is reminded of an episode during her surgery. She was shivering under a thin blanket in a freezing room optimized for machines, not patient comfort! Won’t be an exaggeration to say we have lost that nature touch in our healthcare. WHO was spot on when they declared that being truly healthy isn't just about not having any diseases or illnesses. It's about feeling good physically, mentally, and being able to function well in your daily life and community. So for doctors to really help people heal, they gotta look at the whole picture of what makes someone feel good and whole as a person - not just treat the physical symptoms. What that means, is your mind needs some TLC too. This is where stuff like cognitive-behavioral therapy (CBT) comes in handy. CBT is a type of talk therapy. You work with a mental health counselor in a structured way helps you become aware of inaccurate or negative thinking so you can view challenging situations more clearly and respond to them in a more effective way. Angry at your useless body? Sad because you can't do the...
Chapter 8
Details coming soon.
Summary
No conclusions! Sorry. There just aren’t any neat conclusions or uplifting finales when it comes to chronic illness. O'Rourke’s journey represents the authentic, messy, unresolved nature of living with a chronic condition. It's a reality marked by fleeting glimmers of health amidst the tumult. The only conclusion is that there is no permanent conclusion, no final healing destination to be reached. Just acceptance of an ongoing tug with illness- an ever-changing reality.
More knowledge in less time
The Art of Community
Get the key ideas from nonfiction bestsellers in minutes, not hours.
Find your next read
Get book lists curated by experts and personalized recommendations.
Shortcasts
We’ve teamed up with podcast creators to bring you key insights from podcasts.
About the Author
My name is Meghan O’Rourke, and I’m a New York Times bestselling author, poet, editor, and podcaster. My work often tackles challenging subjects such as chronic illness and grief, which can be difficult to write and speak about, of course, but also to experience firsthand.
Thank you for registering with Storise.
Your journey with books and ideas begins now, anytime, anywhere.
You can now use your registered email to log in to the app.