What is uniquely problematic about these alternative diagnoses and often-expensive treatment regimens for diseases that a patient doesn’t have is that while they may work as a placebo, they usually do not address the root of the patient’s problems and may cause harm. Psychological work and exercise treatment, for example – the only two therapies that have ever been proven effective in the treatment of people with long-standing fatigue – are usually not suggested. Patients may be treated for chronic fatigue syndrome, chronic Lyme disease or a leaky gut when the symptoms are actually caused by severe sleep apnoea or other sleep disorders, florid autoimmune disorders, extreme physical deconditioning or malnutrition.
Mr D, a 78-year-old man, came to me accompanied by his concerned wife. He had been suffering fatigue and cognitive difficulties for a number of years, and his symptoms were getting worse. He had just spent two years being treated for what an integrative-medicine GP had diagnosed as chronic fatigue syndrome. Mr D was not aware that the tests and treatments he had paid thousands of dollars for were ‘alternative’. He thought he’d been seeing a specialist for treatment of a disease that existed and that he had. Despite diligently swallowing every pill and following every dietary restriction prescribed, he was getting worse. He made furniture as a hobby but could no longer measure and cut the wood correctly. He got the measurements wrong, couldn’t piece the individual components together or control his tools. He struggled on, trying to work past the difficulties and create the way he had for decades. He was also losing vocabulary. He had developed convoluted ways of remembering where he left his glasses and keys, of remembering people’s names. These systems of remembering took up many hours of his day. It was no surprise that this extraordinary effort, frustration and fear sapped him of energy. He sat before me, pausing every three or four words, screwing his face in concentration as he grasped for words. It was obvious, and would have been to most doctors, that Mr D most likely had dementia. I told him and his wife what I suspected. And in the face of this devastating diagnosis, their bodies visibly relaxed and their faces filled with relief. ‘Of course,’ Mrs D said, taking her husband’s hand. Mr D looked at his wife. ‘Of course.’
These alternative practitioners (the naturopaths, homeopaths, the integrated GPs) follow the mainstream medical model to a tee. The only things ‘alternative’ about their practice are the diagnoses offered and the treatments prescribed. They spend as much time as we do prescribing industrial substances, just not ones on the Pharmaceutical Benefits Scheme. They invent diseases faster than Big Pharma and are now industries that globally turn over many, many billions of dollars each year. And they are certainly not an alternative to a simple, cellular understanding of a human being; nor to the illusion that to be drenched in wellness one must be showered with pills.
*
Until I hit the wards I didn’t really care about naturopathy and integrated medicine beyond it being a topic of argument with my infuriating friend. I thought of it as a benign, if mostly ill-informed, form of support for the not-really-ill. A bit of random dietary exclusion. A few vitamin tinctures or sugar pills. A nice chat, a few bucks and off you go, back to your unimmunised kids and airy house in the suburbs. Having an iridologist gaze into your eyes and tell you all they see can be a very powerful, intimate and enriching experience, even if the story you hear is a fairytale and you leave her office with $300 worth of vials containing empty promises. Many alternative treatments, however, have severe side effects and can damage the body. The greatest potential for harm is when the patient has a serious organic disease, which is misdiagnosed or for which effective treatment is shunned.
In the hospital we often see harmful results of the seemingly harmless. A 43-year-old man was sent to my ward with a fist-sized pocket of pus in his lung. He’d been intermittently feverish for weeks, drenching his sheets each night and coughing up large volumes of purulent sputum. He’d consulted a reiki therapist who treated him with three sessions a week, hovering her hands a few centimetres above his chest for thirty minutes. When his skin turned the colour of cement his girlfriend finally convinced him to see his GP, who (suspecting severe pneumonia) ordered a chest X-ray, saw the fluid-filled abscess and sent him straight to hospital. Of the reiki, the man told me, ‘It was really helpful. It eased my cough.’ Unfortunately the cough was his body’s attempt to get rid of the accumulating pus. One of our treatments was to encourage his cough.
Perhaps this is one argument for the integration of mainstream and alternative medicine: safety. If the reiki therapist had studied medicine, she might have recognised the signs of a serious chest infection and had something to offer in the absence of organic disease.
The British journalist John Diamond, who died of throat cancer in 2001, wrote in his book Snake Oil and Other Preoccupations:
it’s no coincidence that alternative medicine grew as Margaret Thatcher’s Weltanschauung took hold. In many ways it was where the fading hippiedom of the early Seventies was able to meet the new materialism of the Thatcherites head-on. Alternative medicine, like Thatcherism, tells us that our personal well-being is entirely in our own hands, that we can all have anything we want – perfect health, freedom from anxiety – if we want it enough and are willing to take the steps to make it happen … alternativism masqueraded as another form of consumer liberation. No longer would we be tied to a single provider of health – the medical orthodoxy – but we would be free to choose. If we liked the reflexologist’s eccentric view of the body as a series of energy lines which terminate in the feet, then we’d choose that.
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Most medical schools send their students to the bush for a term. In third year I spent three months in a small town in northern New South Wales known for its relentless sun and population of alternative-lifestylers. The old-school surgeon I was placed with told me I was lucky. ‘You’ll see great pathology here.’ I asked him why. He had his hands in his pockets, his short, sturdy legs standing wide. ‘It’s the hippies … They treat their bowel cancer with chamomile tea.’ He looked at the ground, shook his head, looked up again. ‘Until they start vomiting shit. Then they come to us.’ He jabbed his thumb to his chest and grinned. ‘Huge surgery. Great surgery.’
There have been a number of high-profile cases where people have rejected mainstream therapies outright and embraced alternatives to cure themselves. In Australia, Belle Gibson (who fabricated her diagnosis of a brain tumour) and Jessica Ainscough aka the Wellness Warrior (who had developed epithelioid sarcoma, a rare soft-tissue cancer) both publicly rejected mainstream cancer treatments. They claimed healthy lifestyles and alternative therapies, such as Gerson therapy, had alone cured (Gibson) or were curing (Ainscough) them. Ainscough died earlier this year.
The clean-living aspects to their regimens – eating mostly vegetables, exercising, attending to mental wellbeing – were admirable, and are probably the key ways a human can give themselves the best shot at longevity and health. But these are preventive actions that need to be practised over a lifetime – to prevent cardiovascular diseases, dementia and diabetes. They do not have the power to cure cancer.
The belief that that the mainstream medical diagnosis of impending, unavoidable death is wrong and that some other version of the body offers hope must be incredibly seductive. Most cancer patients in Australia use some form of alternative therapy throughout their mainstream treatment. These therapies are often touted as being holistic, acting on parts of the human animal ignored by Western medicine: chakras, energy lines, biofields, channels, spirit, auras. Most oncologists will advise against fringe practices that may be dangerous, will advise when the practices are non-beneficial, and then understand when their patient does everything they can – even the futile – to get better. Desperate people, desperate measures. Undertaking what are often arduous alternative treatments (extreme dietary restriction, repeated noxious enemas, hours of meditation) can seem like ‘taking action’ at a time when one has lost all control: one’s body is wildly growing disorder
ed cells in places they should not grow; doctors are prescribing extreme medications, radiation and surgery; the whole thing is happening to you, at you, on you, in you. An alternative hope offers the illusion of wresting control, of saying ‘no’ or ‘not enough’ or ‘fuck you’ to the authorities: your doctors.
In January 1997, the Guardian published ‘The Gift of Disease’, an article by the writer Kathy Acker about her breast cancer. She was initially treated with a double mastectomy, but when her lymph nodes were found to contain cancerous cells her doctor recommended a course of chemotherapy. Acker refused the treatment. She wrote:
As I walked out of his office, I realised that if I remained in the hands of conventional medicine, I would soon be dead, rather than diseased, meat. For conventional medicine was reducing me, quickly, to a body that was only material, to a body without hope and so, without will, to a puppet who, separated by fear from her imagination and vision, would do whatever she was told.
Acker was subsequently treated by multiple alternative therapists from a wide variety of disciplines, including acupuncture, shamanism, Gerson therapy and herbalism. She carried a suitcase full of herbal supplements with her wherever she travelled. She died of widespread metastatic breast cancer in December 1997, in Mexico, at an alternative health clinic.
Whether or not her life would have been saved by early chemotherapy is unknowable. As is the impact – positive or negative – of her adherence to alternative health regimens. Regardless, I think she accurately diagnoses our problem: at base, personally, socially and politically, we have come to think of our ill selves as meat. Individual chunks of meat lacking only some kind of medicine.
*
The runaway bestsellers The Brain That Changes Itself and The Brain’s Way of Healing by Norman Doidge have been widely criticised – particularly by doctors – for ‘blaming the patient for their disease’. The Canadian psychiatrist’s two books rage against the institution of medicine that is structured to reinforce what he calls a patient’s ‘passive resignation’ in the face of disease. He argues that we have been trapped by the myth that treatment comes only in the form of a pill. He believes that medicine must change.
His interest is in brain plasticity. He shows the multiple ways there are to ameliorate or slow the progression of many neurodegenerative diseases through doctors ‘prescribing’, medical systems supporting, and patients engaging in active therapies. These therapies are mostly arduous and involve a great deal of mental and physical effort. One of his case studies tells of John Pepper, a man with Parkinson’s disease who had almost lost the ability to walk. Pepper teaches himself to make the brain stem (unconsciously performed) movements of walking cortical (consciously controlled). Each movement is directed by a conscious thought – bend hip, lift knee, kick foot out, straighten knee – so that to take a step requires all of Pepper’s concentration. You’d have to train like an athlete to attain this ability to make the unconscious conscious: it would be exhausting, you’d have to want to walk more than anything else. You’d need to be taught how to do it. Other forms of physical therapy improve the symptoms of Parkinson’s or slow the decline, but they too can seem much like boot camp. Doctors see patients with Parkinson’s, diagnose them and usually only prescribe medication, as if the patient is a generic, inert body. Conventional treatment has become something one receives from an encounter with a doctor and his or her script pad. It is this passivity of the patient – reinforced by medicine – that Doidge challenges. He asserts that the brain and the body are ‘use it or lose it’ structures. He writes, ‘Exercise decreases the risk of dementia by 60%. If a medication did that it would be the most popular, talked about treatment in medicine.’ Unfortunately, you can’t just buy it. You have to do it.
I sat next to Doidge at a literary festival. As we signed books, I looked at the lines of waiting people – his line snaking far across the room – and I wondered if anything would come of his words, or if we were all buying these books in the millions the way we buy diet books in the millions and never lose weight. We buy them in hope, hold them in our hands, flick through the pages, read stories of transformation, but when we don’t discover a miracle or quick fix we slip them onto our bookshelves. We buy them as talismans. We buy them as if they are pills.
Blame the patients? Blame the doctors? According to an article in the British Medical Journal in June this year, multiple studies have found that, when asked, patients overwhelmingly wanted more studies of non-drug interventions for common ailments – treatments such as physiotherapy, psychotherapy, education and coping strategies. Despite this, according to the World Health Organization International Clinical Trials Registry Platform, 86 per cent of treatments studied in commercial trials between 2007 and 2014 were drugs. Better to blame the socio-political structures the patients and doctors move within, and the industries supporting these structures.
*
Rudolf Virchow said that medicine is a social science and politics is medicine, but he went further. ‘Medicine, as a social science, as the science of human beings, has the obligation to point out problems and to attempt their theoretical solution: the politician, the practical anthropologist, must find the means for their actual solution.’
We feel sick even if we are physically well. We are organically diseased by lack or excess. Most of our healers – mainstream and alternative – now act and are treated like shopkeepers, and have become entrepreneurs (or the pawns of entrepreneurs). If they don’t give us the goods – the diagnosis and pill – we’ll shop elsewhere. We seek passive means of attaining health and longevity, which is what medicine (both conventional and alternative) promotes. We want diagnoses. We want solutions we can browse, buy and swallow, be they pharmaceuticals, tinctures or vitamins. It’s convenient for politicians, suits industry very nicely. Pills are our tiny white black holes: absorbing all our hope, agency and energy. They divert attention from prevention, population health and inequity; they promote consumption.
The individual body and its individual cells exist, of course, and can be altered and treated by drugs. Mainstream medicine is magnificent in many situations: in treating frank organ dysfunction, trauma and infection; in ablating clots and tumours and abscesses. It is sometimes adequate in others: regular bursts of personal support for the desperate or lonely, prescribing drugs to protect organ function, prescribing drugs that must be taken for a long time by many people to extend the life of some. But prevention and amelioration of most of our grumbling Western ills demand something more than medicine. An alternative, a complement; yes, an ‘integration’. Real ‘integrated medicine’, however, is not Pfizer plus herbs plus acupuncture; it is not recognising a bunch of new diseases and their treatments; it is not energy lines plus cells. It is recognising that a large portion of our ill health is a combined mental, physical, environmental, interpersonal, social and political phenomenon.
A cause for many of our Western ills, organic and non-organic alike, might be found in a catchphrase that has become a cliché: that our society has degenerated into an economy. Read the papers – our main purpose and duty is to acquire and consume. At the expense of others in need, of our planet. Inequity increases. Education standards decline. We suffer existential ills that manifest in our bodies. We drive, work and eat, become sedentary, fat, diabetic and depressed. Hospital wards fill with social catastrophes and the outcome of styles-of-life and social policy. Mainstream medicine alone cannot fix this. Real integrated treatment of our disease requires vast social action. It requires personal action: use it or lose it.
Instead, we seek cures that are acts of consumption, quietly swallowing the disease itself. Browsing the numerous alternatives, we buy instead of do. And neoliberal to the core, we regard our population’s health as a problem that lies with discrete, always self-determining individuals. And at the very times when the modern, mainstream, despised and idealised discipline of medicine might actually help, or when it finally says ‘no, it’s not your body that is sick, I cannot h
elp you’, it is only then we start to run. Seeking an alternative that will not fail us, that offers us hope, that promises a cure, but which turns out to be more of the same.
The Monthly
Fully Present, Utterly Connected
Tegan Bennett Daylight
When I remember being a child and reading, I think first of sunlight, which I was always manoeuvring to be partly, though not wholly, in. This sunlight is always linked to quiet, to stillness. The sense of movement around me, but happening at a distance – my mother talking on the telephone (her voice louder as she strayed to the very end of the cord), or my sister using her sewing machine – the sort of movement that envelops you but allows you to be alone. The psychotherapist and writer Adam Phillips, referring to D.W. Winnicott’s essay ‘The Capacity to be Alone’ (1958), says that ‘the goal for the child is to be alone in the presence of the mother. For a long time this has seemed to me to be the single best definition of reading.’
Perhaps the best definition of good writing is the kind that recreates this safe aloneness, this suspended awareness of the self, this being lost but at the same time attached. We adult readers can go a long time between books that have this effect, and still be entertained and even inspired by what we read. But if we are lucky, every few years a book or a writer will appear that brings this sense back – a book that makes us feel as though that stillness in the centre of movement has been both captured and, in the act of reading, reproduced.
Joan London’s The Golden Age is this kind of book, and as I learned in reading my way through her work, she is this kind of writer. The best word that I can come up with to describe London’s voice is mature, which has not much to do with the author’s age, and everything to do with her skill. It is the sort of writing that does not immediately invite a mental reply, whether that reply is how wonderful! or how awful! It does not obscure its subject – no chorus line of verbs or orchestra of adjectives gets in the way of what she is writing about. Her writing, which calls attention to itself only by its precision, gives you an opportunity, the way silence sometimes does, to reflect productively. Best of all, it returns you to an early pleasure: the pleasure of story, of wanting to know what happens next.
The Best Australian Essays 2015 Page 19