Caitjan Gainty and Grazia De Michele explore modern medicine’s complicity in creating uncertainty and its unwillingness, once created, to address it
In 1978, Susan Sontag opened her celebrated Illness as Metaphor with, fittingly, a metaphor: “Illness is the night-side of life, a more onerous citizenship,” she observed. “Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick.” Sontag invoked this notion of dual citizenship as a way of characterising her own forced emigration from health to cancer and back again, noting that each of us would be required to give up our “good passport” and to become a “citizen of that other place,” at least for a time.
Sontag viewed the space in between these two states as almost accidental, as a space in which no one was to remain, but only travel through. Yet, it has become quite a crowded place in recent years, populated by those who, having been denied full rights of citizenship among the well and the sick, have nowhere else to go. Indeed, that’s our position: two women, in the prime of our lives, who may or may not have a life-threatening disease, who either are or are not already ill, are or are not still healthy. We are the “at risk.”
As an honorary diagnostic category, the “‘at risk”’ could not have happened without the mid twentieth century rise of evidence-based medicine, which solidified and codified the preexisting medical inclination to view population level data as indicative of individual disease course [Timmermans and Berg 2003]. But the “at risk” category as we have experienced it is probably more indebted to the rise of so-called precision medicine with its focus on genetics and genomics to make diagnostic and therapeutic determinations and explain disease causation.
The distinction between the “certainly” and the “possibly” seems to fundamentally distance them from each other. For those who will certainly become ill, diagnosis before symptoms seems among the brightest promise of contemporary medicine, for the potential this may hold to stave off or delay the onset of disease. By contrast, those who are only potentially ill seem to have more in common with the rest of the apparently healthy. “We are all going to die of something,” well-meaning friends told us. Our situation is only different from everyone else’s insofar as we know what we might—but might not—die from.
In fact, this is not true. Knowing the disease you seek to avoid makes explicit the enemy, offering up for medical practitioners an object to attack, for patients a fully-articulated image of an eventual demise. In the clinic, we are treated as though we are already diseased with this thing that we may or may not one day develop, our requests for a more measured approach and a more nuanced language to account for our “at risk” status systematically falling on deaf ears, our expectations for support enabling us to better handle uncertainty constantly frustrated. Increasing numbers of drugs with countless potential side effects are thrown at us, which it is suggested we should take on the off chance we will become ill. Visits for scans, check-ups, check-ins, and drug adjusting all mount up. With this we are structurally and personally assaulted with the knowledge that we are sick now, already. Whatever our future holds, we are currently consumed with the exhausting and taxing treatment for the disease of “at risk.”
The only real treatment to this disease we have been burdened with is a rather radical one: to stop. Stop treatment for this thing we might or might not have, so to banish the spectre of possible disease that plagues us both, and return to our normal lives where we, like everyone else, can find solace in the plain fact that we are healthy now. This is indeed the prescription the great medical sceptic Ivan Illich might offer: to recognise this disease for what it quite explicitly is, not a palpable real entity, but a medical construction based on conjecture, that has come to infiltrate our everyday lives. And it would feel better. Though there might be the odd worry about what’s to come, the relief from the constant stress of being at risk and from the side effects of the treatments we have been put on would be substantial, our liberation from contemporary medicine, eager to treat but unable to support, would be an empowering one.
But at least for now, there’s no going back. Despite the critical perspective our training as historians offers us on contemporary medicine, we have not yet been able to gather the courage required to defy the current conventions regarding who gets to decide whether we, and our bodies, are ultimately ill or well.
In fact this should not be an individual task, but should come as part of a collective exercise in “healthy skepticism” aiming to challenge medicine to look at itself, to recognise both its complicity in creating uncertainty and its unwillingness, once created, to address it.
Caitjan Gainty is a lecturer in the history of science, technology and medicine at King’s College, London.
Grazia De Michele is a PhD student at the University of Genoa (Italy) working on the history of breast cancer activism in the United States.
Competing interests: None
Acknowledgements: We thank Nikolas Rose for introducing us to the term “presymptomatically ill”.