Do you not see how necessary a World of Pains and troubles is to school an
Intelligence and make it a soul? – John Keats
Until my daughter Olivia gave me the gift of The Invisible Kingdom: Reimaging Chronic Illness, by Meghan O’Rourke, I assumed that chronic disease was meant to be tucked into the recesses of the human who was experiencing it. After all, more able-bodied individuals must only have limited capacities to invoke empathy for the never-ending illness-management paths that us “chronics” are forced to take. However, Ms. O’Rourke’s memoir effortlessly connects us, skin to skin, with her own story of years spent in foggy exhaustion: electric sparks prickling her legs, joints stiffened into uselessness, memory gaps that left this lauded poet and essayist searching to remember the name of the season that comes before summer. For years she declined into long hazes of ambiguous illness, an autoimmune disease without name, treatment, or recognition. One does not have to be a fellow chronic to respect and be drawn to the science the author cites or the feelings she invokes. On the contrary, one simply must have a pulse – a heart-rending pulse – to appreciate everything the book has to offer.
I found myself challenged when selecting which themes in O’Rourke’s memoir to write about for this post because it’s not just about a journey of chronic illnesses. It’s also about the recurring theme of listening to doctors who pathologize symptoms; it’s about the rise of chronic illness and autoimmune diseases in this country; it’s about grappling with identity when one has an “invisible” illness; and it’s about the search for healing. The Invisible Kingdom is a manifesto for change within the medical community and a profound, sometimes lyrical, deeply moving portrayal of a vague and elusive set of diseases that live in autoimmunity.
When it comes to chronic illness, both Western and alternative medicine read the body of the patient metaphorically. Western medicine is based on one kind of metaphor – the body is a car, and its parts require upkeep, piece by piece. It is not a metaphor that works well for chronically ill patients whose parts cannot be “fixed.” Alternative medicine (functional medicine) offers a more compelling metaphor: the body is an ecosystem and caring for it as a whole and making the patient feel seen, is crucial. When deployed well, alternative medicine may be such a good metaphor it literally changes the physiology of patients: healing as a metaphor.
“The zapping shocks had recurred periodically since I’d first had them right after
I graduated from college. Back then, they came on after I showered or as I walked
to work, the shocks flickering up and down my legs.”
People whose illness has no name, or a name with symptoms that are too complicated to understand, receive little sympathy. The human vessel assigned to the illness finds herself going underground. It becomes more and more difficult to summon the sparks that living life requires. One twisted byproduct occurs when even the patient begins to think that everything wrong is with her, not within her. And so, it is a truth among the chronically ill that a woman with vague symptoms like fatigue and pain will be in search of a doctor who believes she is actually sick. Of the nearly 100 women the author interviewed, all of whom were eventually diagnosed with an autoimmune disease or another concrete illness, more than 90 percent had been encouraged to seek treatment for anxiety or depression by doctors who told them nothing physical was wrong with them. So, I ask, wouldn’t it be better if doctors just look us in the eye and say, “I don’t know what’s wrong with you, but I believe you"?
Autoimmunity and allergies both occur when there is an inappropriate immune response; a condition in which the immune system mistakenly attacks healthy cells and tissues of the body. The immune system ends up attacking similar-looking molecules as the pathogen (the foreign substance). Immune regulation describes the body’s mechanisms for calling its army of immune cells back and turning off their destructive power. When the regulatory “T” cells aren’t working, there is an out-of-control immune response, making us sicker than we should be. This is an “inflammatory” response, and a reason inflammation is not our friend and the reason that infections can be significant triggers.
The field of epigenetics has suggested that changes to gene expression during one’s lifetime can contribute to autoimmune disease. The idea that events of life can shape the genetics from childhood runs counter to all that we learned in high school biology. Epigenetics, though, does not refer to changes in the DNA code, but to changes that can turn a gene “on” or “off.” And these changes, it turns out, can be passed from generation to generation. Epigenetics helps determine outcomes through biological processes that impact the way proteins access or “read” a gene. Smoking, working night shifts, infections, and stress are examples of lifestyles that can cause epigenetic changes in the body.
Trauma and stress are two significant pathways that affect the immune system. They impact the relationship between the sympathetic and parasympathetic nervous systems and our hormones. (Our human body hormone system represents a large feedback loop connecting various systems and organs, in precisely the holistic way that the Western medical system is not designed to treat.) Either event, trauma or stress, can manifest dysregulation of our nervous system and prompt an autoimmune response.
As O’Rourke points out, there are multiple explanations why autoimmune diseases, allergies, asthma, and food intolerances are rising in the West in comparison to traditional cultures. There is massive pressure associated with modern life: degraded food systems, pollution, endless stressors, and weak safety nets. With each generation comes a weakening of the body’s microbiome and environment which we, in turn, hand off to our children.
“It’s hard to know what happened when, because for so long I wasn’t sure that
I was sick. Sometimes I wonder, have I always been sick since I was a child with
aching knees and bouts of exhaustion? Or had I not been sick at all until my
family rented a house after my college graduation, close to Lyme, Connecticut,
after which my neurological symptoms began? Was life perhaps just a long
chronic illness, as a prominent feminist historian would later ask me after I
gave a talk about chronic illness – an implication being that it was my
identification with my illness that made me ‘ill’”?
Whatever role stress plays in chronic illness, it likely didn’t cause the illness. We are not responsible for our diseases. With that, it’s understandable that we so desperately want magical solutions, or just solutions of the ordinary kind. The counterpart of the notion that stress makes us ill is the idea that positive thinking can heal us. While it purports to give us back control by providing coherence amongst the chaos that illness brings, there is a burden that comes with a cheery outlook. By default, it stuffs our fears and darker thoughts to greater depths and creates the false narrative that we, the ill, are not enough, so much so that we must fake it till we make it. There’s dignity that can be captured by making the reality of it real.
Meghan O’Rourke was eventually diagnosed with Hashimoto’s (a deficiency in the body’s ability to produce sufficient amounts of the thyroid hormone), endometriosis (a disease in which tissue similar to Uterine tissue, grows outside the Uterus), Lyme disease (“bad” microbes transmitted to humans by infected ticks), POTS disease (where the body can’t coordinate the balancing act of blood vessel constriction and heart rate response), and Ehlers-Danlos syndrome (a group of inherited disorders that affect connective tissues — primarily skin, joints and blood vessel walls). Which came first? Who knows. Diseases of the immune system remain mysteriously elusive and often, chronology takes a backburner to the slow steady slog that is needed to identify the myriad of triggers for off-kilter immune system disorders.
Chronic illness is almost by definition never a story of overcoming because the disease trajectory never fully resolves. This does not mean that one cannot lead a full and rich life, but it does mean that symptoms must be managed throughout the remainder of life. This requires an identity adjustment, of sorts, made more difficult when medical providers refuse to recognize the physical reality of the disease, when you have no name for what’s hurting, or you’re told it’s psychosomatic. In his phenomenal book Being Mortal, Atul Gawande notes that the “battle of being mortal is the battle to maintain the integrity of one’s life – to avoid becoming so diminished that who you are becomes disconnected from who you were or who you want to be.” In my opinion, functional medicine, a systems biology–based approach that focuses on identifying and addressing the root cause of disease, should be the only option when one is experiencing one or more chronic autoimmune symptoms.
What O’Rourke has given readers is a science-rich, thought-provoking, empathy-inducing, and highly readable literary feat. Fellow sufferers will see The Invisible Kingdom as a long overdue helping hand in the dark. Healthy people might not notice it on the shelves, but I hope the title lands in many more hands. O’Rourke’s strength is in finding a multiplicity of ways to draw the reader into the experience of feeling unwell past the brink of our language’s capacity to neatly categorize and summarize the experience. Her words dance, to the extent that illness can respond to literary movement; her words sooth while never sugar-coating. Her words tell a vital tale of the nearly 50 million Americans who are experiencing poorly understood autoimmune disorders.
Writer’s note: I use the term “chronic illness” and “chronic disease” interchangeably in my post and place them both in the category of “poorly understood illnesses.” While there are significant differences between, say, chronic obstructive pulmonary disease (COPD) and autoimmune disease, reading about Ms. O’Rourke’s experience with autoimmunity will no doubt help anyone living with disease. She, however, speaks specifically of chronicity – the unendingness of it all, which I found to be rare and very helpful.
Mary Daniel is a Certified Integrative Nutrition Health Coach dedicated to the pursuit of good health for everyone. Through her business, Your One Precious Life, she partners with clients and communities and in the spirit of collaboration, paves the way for health transformations.
Interested in a free health consultation? Visit: www.youronepreciouslife.com or email mary@youronepreciouslife.com.
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