What does it mean to be healthy? And if you won’t answer that question, here’s another: If you don’t understand healthy, how do you know when you are sick?
Across the globe, systems of healthcare are symptom-led. A multinational industry thrives on treating diseases. Industrialised nations, especially in the West, face an epidemic of chronic conditions. Diabetes. Heart and Respiratory diseases. Obesity. At the same time, each of us is beset by hydra-headed incentives to make lifestyle choices which adversely affect our health – diet, for example; screen time and social media on digital devices; smoking; unprotected sex. We experience the consequences of our lifestyle choices – then, when some of us become ill, we stigmatise people who show visible signs of ill-health.
Of course, most of us try to do the best we can. Until more pressing priorities get in our way: We have to pay the rent, to clothe our children, to find work. Maybe we don’t understand healthy because our society has become sick.
I am beginning to think that the more complex the notion of healthy, the lower our motivation to achieve it. Rather than educating us to live a physically or emotionally – or financially, or socially – healthier life, the imperative of health education is routinely outsourced to a vibrant healthcare industry. And this industry has blinded us with the myth that doctors will cure us, that medicines will be created for every aliment.
Two decades ago I was diagnosed with Meniere’s Disease, a long term, progressive condition affecting the inner ear. Ten years later, I was unrecognisable. My hearing failed. My proprioception (my sense of balance, motion, position) deteriorated to the point where I lived in gut-wrenching fear of ‘having an attack’. Long-term prescription medicines made me shaky and restless. I did not sleep and had extraordinary anxiety.
The only ‘health’ discussion I recall was with my Ear, Nose and Throat surgeon who asked me if I was “prepared to live the rest of my life like this?” Invariably, the clinical conversations I had with doctors were about my left ear, whether my symptoms were changing (or not), and how I might avoid dangerous situations (like crossing a road). Their advice was meant well, but all the limitations on my personal autonomy reinforced my sense of dependency.
Fast forward 10 years, and I underwent an operation to remove my inner ear. Desperate for reassurance, I believed the operation was my cure! Between diagnosis and operation, I had lost my sense of who I was – who I am.
What I wanted was to be healthy, although I did not understand what that meant. Today I am much more serious about my personal responsibility; I take steps, proactively, to manage the symptoms associated with Meniere’s Disease and the auto-immune conditions which subsequently developed.
Almost all that I learned about my condition – my disease-specific education – came from a patient group, the Meniere’s Disease Society in the UK. I am eternally grateful. Thanks in part to their example, I have charted a career path which allows me to amplify the informed voices of health advocates. When illness or disability strikes a person, the whole family is affected. Illness of one family member disrupts the whole. Illness of two, illness of three, becomes devastating. People who have experienced illness can turn these difficulties into support for others facing a similar struggle.
Elie Wiesel, Holocaust survivor and Nobel laureate, believed that “Illness may diminish me, but it will not destroy me.” Elie ‘saw that survivors will not forget the difficult trek from illness to health. This is why people with illnesses, and those that love them, flock to advocacy groups. To question, to learn and to hope’.
Recently I had the opportunity to work with the makers of the award-winning documentary Out of My Head. The film is stunning throughout, a glimpse of our new health reality: the pandemic of multiple chronic conditions.
I was particularly struck by one family: mom, dad and teenage daughter, all living with migraine. The film portrayed their individual hopes, dreams and aspirations, alongside scenes from the everyday, painful chaos of enduring chronic illness.
Out of My Head raised awareness of migraine, a devastating illness. It made an example of a family doing the best they could, yet day-by-day moving further from any received idea of what it means to be healthy.
Globally, our systems of healthcare are in crisis. We consistently fail to see, to witness the true impact ill health has for our society. Although many chronic conditions are preventable with meaningful health education and good management, we are locked into a symptom-led understanding of sickness.
While we are spiralling towards panic, the truth is hiding in plain sight. Anywhere that you care to look, the most effective health interventions have little to do with the healthcare industry. They include public policies to alleviate poverty, incentives to encourage good diets and the supply of healthy food, measures to free up more time for exercise and play and parenting. If we want healthcare that is truly disruptive, we need to stop seeing health in isolation from our larger environment. We need to abandon the mistaken belief that the only crisis in healthcare is cost, of treatment and of medical science, and hence that the real measure of ill health is financial. Health in this larger sense is a shared endeavour, a process of societal change for future generations. Then maybe we would understand the real meaning of healthy.