Antimicrobial resistance (AMR) is in the news as public health specialists around the world ask us to pay attention to Antibiotic Awareness Week. Posters have gone up across the UK warning that ‘taking antibiotics when you don’t need them puts you and your family at risk’. ‘Take your doctor’s advice’ we are told. But this appeal to expertise at this particular time in history sits rather uncomfortably for me with the responsibilisation of the general public represented by this and other campaigns. I have suggested in a recent editorial that ‘calling for action from particular groups risks making them feel or appear responsible – it introduces moral and political questions as well as purely practical ones’. Are we, the general public, meant to worry about AMR or leave it to the experts?
To me AMR is a problematic focus for worry. Though framed as a future problem it’s been happening ever since the first antibiotic was used in clinical medicine. And yet it is happening at different speeds and with different consequences depending which bacteria is in question. What then should we worry about? When and how much?
Asking these questions makes me think about a quite different cultural production – the novels of John Green. An acclaimed writer of teen fiction, John Green’s work came to wider prominence when his book about adolescent cancer patients was made into a 2014 film, The Fault in Our Stars. The book describes a relationship that blossoms between two people whose physical health is precarious and future uncertain. It centres around Hazel, a sixteen-year-old with cancer which has spread to her lungs. Hazel has to care for her health. Her life is full of medical equipment and warnings about the risks of different activities given her physical fragility and vulnerability to infection. In Green’s story however she chooses to get out into the world. Green’s story allows us to understand why this might be an entirely human response to danger, especially in adolescence.
John Green’s newest book Turtles All The Way Down, is told from the perspective of another teenage girl, Aza, whose mental health is fragile. Aza experiences sometimes consuming anxiety about the risk of contracting C. difficile or other illnesses. She deals with this anxiety by opening and reopening a small wound on her hand, frequently cleaning it with disinfectant hand gel. For the reader this is an uncomfortable experience, as opening the wound is surely likely to increase the risk of infection, but somehow for her the action is comforting. In the older book, Hazel – who has a lot to worry about – fights to make space for other things. In this newer one, someone who is physically well is shown to be struggling with a sense of embodied vulnerability and very scary experiences of her own body.
‘Admittedly I have some anxiety problems’ Aza tells us, ‘But I would argue it isn’t irrational to be concerned about the fact that you are a skin-encased bacterial colony.’
Public health specialists and others have not always been cautious about invoking doom and gloom scenarios for AMR. AMR may be presented as bringing a return to the medical dark ages, to a time when surgery or childbirth was much more risky, and everyday experiences like a graze or the flu were dangerous sources of infection. In this situation chemotherapy might also stop working – without antibiotics to manage infections people like Hazel may yet have to worry more.
In asking us to mobilise against AMR, experts ask us to act to preserve medical efficacy. But they want us to trust expert messages, not to become like Aza beset with fears from an inability to rely on modern medicine and our own bodies.
Perhaps we could say that they try to get us to worry the right amount about AMR.
For example the current campaign targets ordinary or mundane ‘misuse’ such as taking antibiotics for colds or viral flu, by insisting that these usual resolve on their own, without antibiotic treatment. It’s not clear that this has been that successful though. Efforts to educate the public about the difference between a bacterial and a viral infection have been difficult, precisely because the symptoms and experience of the infections might be very similar, and because of counter narratives about ‘good bacteria’.
In my view therefore, more might be done to connect public health to our understandings of infection in all their diversity. By this I mean not only the difference between a bacterial and a viral infection, but also the way infections have very different salience and meaning for different people. For Hazel any infection may be dangerous, but precisely because of the higher risks she lives with all the time, she is ready to risk exposure and set aside such fears. For Aza, infections assume a disproportionate place in her world of worries. If we are going to live in a world where AMR is increasing, we will have to better understand our orientation to risk as well as our practices for avoiding and living with bacteria.
As Brown and Crawford (2008) have argued, there is a risk that for those most vulnerable to resistant infections and most in need of antibiotics, discussion of bacterial resistance might make them feel guilty for the use of antibiotics and for AMR, shifting blame away from institutions. For cancer patients, infections are already dangerous – and will only become more so if AMR gathers pace. But talking about vulnerability does not capture all the meanings of infection for a cancer sufferer. Everyday infections may be minimised in comparison to the cancer, or dismissed as an impediment to getting on with some of life, such as falling in love. People like Hazel should be allowed both to focus on the immediate problem of their illness, and also to ignore it in favour of finding time for enjoyment of the life they have. For others that need antibiotics, or other forms of care, it is important not to deter help-seeking, as Jaimie Ellis reminded us in talk at a great BSA MedSoc event on this last week.
For those who are inclined to worry, the story of Aza might remind us that it is possible to worry too much. However Aza’s mixed up feelings about her body also suggest we will not simply wake up to find ourselves living in the Victorian era, with a painful awareness of the limits of medicine. Aza is not only fearful of infection, she lives with a sense of bodily risk that is informed by medical knowledge. When public health ask us to return to the infection-minimising practices of the past (like washing hands with soap and water), they don’t engage an emotional and mental sense of the body that is shaped by biomedicine. We might not always know about the difference between bacteria and virus, but we do know that bacteria enter through very different routes, and are present all the time, and that getting an infection is as much about our physical vulnerability as maintaining our body’s physical integrity.
As so often when lay people confront medicine and public health, we have to walk a tightrope between worrying too little and too much, a predicament Sue Ziebland and colleagues have called ‘the Goldilocks zone’. Meanwhile I worry that campaigns risk generating vague unease without developing deeper shared understanding of the genuine threat posed by AMR.