Adrift in a landscape of conflicting medical theories
Julia Buckley and Nick Duerden, two journalists suffering from chronic pain and chronic fatigue respectively, have written thought-provoking memoirs of their quests for such alternative cures, that explore the limitations both of Western medicine and of alternative and traditional medicine. They also reflect on the countless ways in which illness affects one’s sense of identity: as Hilary Mantel puts it, illness has the power to make us “foreign to ourselves”.own cost and risk, of course.
Julia Buckley and Nick Duerden, two journalists suffering from chronic pain and chronic fatigue respectively, have written thought-provoking memoirs of their quests for such alternative cures, that explore the limitations both of Western medicine and of alternative and traditional medicine. They also reflect on the countless ways in which illness affects one’s sense of identity: as Hilary Mantel puts it, illness has the power to make us “foreign to ourselves”.
Buckley and Duerden both grapple with the wider ethical, emotional and psychosocial implications of suffering that may or may not have a psychosomatic dimension. It is a double bind: on the bright side, the assumption that our minds play a significant role in generating and influencing illness promises agency and control. Yet the flipside of agency is responsibility, and in its shadow lurk its darker siblings: culpability, guilt and shame. What is more, self-recrimination about potential subconscious collusion in one’s condition is often aggravated by social stigmatization. Illnesses with a supposedly psychosomatic component can provoke cruel responses, from professionals and non-professionals alike, that revolve around simplistic “all in your head” assumptions that cast patients as hypochondriacs or hysterics who lack willpower and secretly enjoy being ill. “Why did illness always have to mean something else”, Buckley wonders. “Why did people with cancer get told it was because they bottled things up, why did people with heart disease have to read that their explosive tempers were to blame? Why was chronic pain in our hysterical female heads?” Susan Sontag has reflected on precisely these questions, exploring the “punitive or sentimental fantasies” that are spun around certain illnesses. But while Sontag’s mission was the dissection and dispersion of harmful metaphors, Buckley’s approach is empirical. Her body becomes a testing ground for different therapeutic narratives and the often bizarre regimes that accompany them.
Buckley’s eloquently angry Heal Me: In search of a cure homes in on the insidious gender politics that often determine the treatment of female patients. Medical bias against women is manifest in, for instance, Yentl Syndrome, “a modern version of the Victorian preoccupation with female ‘hysteria’, in which male doctors are less likely to prescribe adequate painkillers for women than men, and more likely to dismiss female pain as psychological”. On top of her actual pain, Buckley struggles with others’ perceptions – the “constant assumption that there was some psychosomatic process going on – that I secretly enjoyed moving back in with my mother, that I somehow preferred £344 a month statutory sick pay to a £40k salary”.
Buckley, who suffers from a range of complex medical conditions, first became ill when, one day at work, she reached for a cup of coffee and experienced excruciating pain in her arm and armpit. She tried every NHS cure under the sun, but the suffering only intensified, prompting her to embark on a bold quest for a miracle healer. She travelled back and forth across continents, bathed in chicken blood and slaughtered a goat in Soweto, tried acupuncture and bone-setting in China, ingested medical marijuana in Colorado, took part in a voodoo ritual in Haiti, and took the waters at Lourdes. She interviewed Western pain specialists, traditional healers, gurus and quacks. Some turned out to be disappointments: the Balian in Ubud, for example, who, after she had travelled thousands of miles to see him, said nothing but “Hahaha, you so fat!”, or the Chinese herbalist, celebrated as a miracle-working sage, who advises: “No big problem . . . be happy”.
Unsurprisingly, the array of cures results in a wild mixture of conflicting causal explanations for Buckley’s chronic pain. Western explanations include misfiring neurones, genetic predisposition, pain networks in overdrive, and abnormal sodium channels, as well as risk-factor assessments that take account of socio-economic circumstances and personality profiles. The shamans, traditional healers and witch doctors she encounters come up with more colourful diagnoses, suggesting that her pain betokens a karmic debt, that she was stabbed in the arm in a past life, that a demonic beast in the form of a black cat is wrapped around her neck, that her ancestors are trying to get in touch with her, and that her qi is clogged. Each encounter and therapeutic ritual provides a short period of respite, but the pain always comes back. After almost four years she visits “John of God”, a Brazilian spiritual healer who performs psychic surgeries that involve scraping the eyeballs with a knife or ramming a clamp up the nose. Strangely, it is John of God who heals her. Or not. In any case, it is after her encounter with him that her symptoms finally disappear for good.
Duerden’s Get Well Soon: Adventures in alternative healthcare is a milder, calmer book, but no less compelling. After a bad case of the flu, Duerden simply failed to recover. His permanently tired body forced him to change his life radically by pacing himself, conserving his energy, micro-managing all his movements, and cutting back on his activities. He was diagnosed with post-viral fatigue; his condition worsened when he understood himself to be suffering from ME or CFS. The absence of a known cure for these conditions plunged him into ever deeper despair. The cures with which he experiments in the book are less outlandish and theatrical than Buckley’s, involving vitamin supplements, mineral salts, yoga, meditation, relaxation, CBT, modern energy therapy, brain rewiring, kinesiology, the F**k It movement, hypnosis, psychotherapy, and amygdala calming. Duerden elegantly chronicles his rising despondency and illness-induced identity crisis, and his excruciating search for potential psychological reasons for his illness. Unlike some ME/CFS patients who object strenuously to the suggestion that there might be a psychosomatic component to their illness, as opposed to a purely biological basis, Duerden is completely open to all kinds of explanations for his condition. “Why wouldn’t the mind influence the body, and vice versa?” he wonders. “Why the shame in having a physical condition exacerbated by the mental response to it?”
In his journey through the world of alternative health care, Duerden encounters familiar and less familiar narratives about chronic stress, burnout, information overload, the hazards of modern life, including constant connectedness through social media and email, childhood traumas, negative thinking, illness beliefs and personality types. The causes of his fatigue are identified variously as predominantly physical, social, energetic, emotional, or circumstantial in nature. He, too, eventually recovers, potentially as a result of the cumulative effect of the range of therapies he has tried, although his cure is neither as dramatic nor as complete as Buckley’s.
Together, these two books are important contributions to the burgeoning genre of illness narrative, casting a bright light on the damage done by dodgy doctors, the importance of clinical empathy and the power of ritual, community and love. Both authors ultimately write themselves better by articulating their hopes and anxieties, and systematically working themselves through an overwhelming mountain of research and competing explanations, identifying what works for them and what does not.
Yet in a wider sense Julia Buckley and Nick Duerden are symbols of our age: subjects adrift in a bewilderingly eclectic landscape of conflicting therapeutic narratives, struggling with their autonomy and with the obligation to find the cure that is right for them. The freedom to choose one’s own tailor-made healing master narrative is empowering as well as a burden. In a world where many past certainties have been lost, and in which the dominant biomedical paradigm lets down a rapidly growing number of patients with chronic conditions, ever more people are forced to shop around for therapeutic and spiritual regimes. In a sea of diagnoses, they cast about for metaphors, for narratives, and for healer-figures to keep them from drowning. “Whatever works” may serve as a guiding principle here, but finding out what that might be is not only exhausting, but also requires critical distance, resilience, unwavering optimism and determination, not to mention sufficient funds, as these medical quest narratives demonstrate so persuasively.
Image: Katherine Hanlon @Unsplash