When I was 12, I was ill. Not with a cold, or flu, but really ill; I stayed in an isolation room with its own separate bathroom and a double door that doctors passed through after sanitising their hands. From that spotless room with its curved edges and brightly-coloured walls, I remember feeling, more than anything, bored. It was boring being inside all day, waiting for time to pass, punctuated by episodes of This Morning blaring from a small television set, and my dad’s face smiling through the door: I’ve brought you a McDonald’s.
I escaped the parameters of my diagnosis on a hospital laptop, playing endless games of SimCity. In between the blood tests, transfusions and tubes inserted under my skin, I became the overstretched but omnipotent mayor of a burgeoning metropolis, dabbling in real estate development, town planning and tax collection, watching the satisfaction score of my minions fluctuate on screen as I added and subtracted bus stops.
It was more tedious when I came home. I was closer to the outside world, but immunosuppressant drugs barred me from going to warm, exciting, germ-infested places: school, the cinema, restaurants, swimming pools, discos, birthday parties. Like most who have suffered a life-threatening condition, you find yourself occasionally discussing illness in uncomfortable circumstances, beyond your control. These typically allow for two responses: honesty, or lying. When I returned to school part-time, I chose the latter; students would ask where I’d been, or remark that I was no longer “big boned”, that phrase often used to describe awkward prepubescent fat. In response to their questions, I’d answer anything but the truth – my parents had taken me travelling; I’d gone to stay with an estranged aunt in Mexico. At that point in my life, nothing seemed more uncomfortable to me than the embarrassed sympathy that would arise from explaining what had happened.
And to be honest, even now it’s not something I enjoy discussing, partly because it feels so irrelevant. But this early experience undoubtedly shaped me. Aside from the quirks I developed – a deep hatred of reconstituted mashed potato and an understanding that life is a fleeting, lucky thing – the condition erased my body’s memory of past infections and left its immune system weakened. I can’t receive any vaccines today, something I rarely consider because the UK was, until recently, a country where communicable diseases had been almost eradicated. But current events have pushed these facts back into my mind.
Recently, the UK lost its measles-free status, just three years after the virus was eliminated. There have already been 231 cases of measles reported here this year, in part because of declining vaccination rates. The World Health Organization has named “vaccine hesitancy” – a generous term for the refusal to vaccinate – as one of the top ten threats to global health. “Anti-vaxxing” has become an infectious tendency among anxious parents, fuelled by misinformation that the internet makes readily available. For all the achievements of scientific expertise, we seem increasingly uneasy with its premises. The body, in particular, has become a terrain where scientific facts wrestle with emotional perspectives – both in the rejection of vaccines, and in the coalescence of wellness industries proffering alternative cures.
Part of me, though, feels that it’s difficult to talk about anti-vaxxing without talking about selfishness. The cognitive dissonance surrounding anti-vaxxers doesn’t simply reflect a mistrust of science, but a failure to situate oneself in another person’s position. As Sybil Carlson, the mother of an unvaccinated child who attended a school that suffered a measles outbreak, told the New York Times in 2008: “I refuse to sacrifice my children for the greater good… [but] I cannot deny that my child can put someone else at risk.” What anti-vaxxing really hinges on isn’t a binary between scientific facts and misguided falsehood, then, but a struggle between the rights of the individual and the safety of a group. No-vaxxing is a political act, one where individual liberty trumps collective health.
The writer Susan Sontag was diagnosed in 2004 with myelodysplastic syndrome (MDS), a precursor to rapidly progressive leukaemia, and a sister condition to my own. When Sontag wrote Illness as Metaphor in 1978, a rumination on cancer (she was, at the time, undergoing treatment for breast cancer), doctors still considered that telling a patient the truth of their diagnosis would be “intolerable to all but exceptionally mature and intelligent patients” – instead, information would be relayed to their family. Twelve is a funny age – conscious enough to remember and understand a great deal, but still too child-like to count as particularly mature or intelligent. It’s only recently as an adult that I’ve started to find out more about this disease that is gone, but I’m told could still return.
“Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged… to identify ourselves as citizens of that other place,” Sontag wrote in 1978. Shortly before she died of complications arising from MDS in 2004, she told her son, “this time, for the first time… I don’t feel special”. Illness doesn’t make you special, interesting or worthy – it makes you sick. It’s banal and unfair, neither interesting nor selective, never explaining or apologising.
Vaccines are a collective agreement to address infectious diseases together; epidemiologists call this “herd immunity”, which can’t be maintained below a certain threshold. Anti-vaxxers refuse this shared reality in favour of subjective truths, which are only possible to believe because epidemics of scarlet fever and tuberculosis have long been wiped out. The further I grow from the time spent in that room, the more fortunate I realise those parents must be; fortunate to indulge in alternate versions of the truth, unencumbered by the prospect of dying, having never really lived.