Modern medicine is based on an often-overlooked fallacy: namely, that sick people get better. Most do not. Even if serving as shorthand, the maxim that there are 10,000 diseases but only 500 have cures at least sums up the scale of the world's unaddressed health problems. But what becomes of the majority of people whose symptoms cannot be treated? You might hope that doctors would chase untreatable people like conservationists looking for new species. But the opposite seems true—health systems seem set up to exclude and avoid such patients if at all possible. In this book, Alexander Segall tries to explore what it means for people to live with hidden, chronic health problems. He comes to the problem as a health sociologist with lived experience of chronic illness (regular back and neck pains). This perhaps explains why his focus is largely, in my opinion unduly, centred on the impact of chronic illness on personal identity and narrative. This he covers well, surveying the literature in a way that will be helpful for postgraduate students also working on similar fields. And yet, his thinking in this domain does not really extend our understanding beyond what Arthur Kleinman's brilliant book “The Illness Narratives” taught us in the 1980s. Worryingly, Segall does not cite or mention the work of Kleinman and other important thinkers in this field. He states early on that his methods involved combining literature reviews with illness narrative accounts from qualitative interviews and blogs. This sounds like a reasonable approach, although it is never made explicit how he chose/screened/selected his articles/participants/blog entries. This might explain why most of the wisdom in these pages are found within quotation marks. For instance, it is helpful to recap Bury's notion of biographical disruption and Charmaz's insight that “the lack of a legitimate medical label can prevent individuals from revealing their chronic health problems to others” (32). Sadly, it is unclear if, and how, this book substantively adds to the literature it cites. For a book centred on illness narrative, this book is lacking in characters. The writing is clear, but dry, so by the time we finally get to the first case study on page 65, we are excited to read first-hand accounts. Unfortunately, rather than being deep dives into the psyche of sufferers, the case studies provide Canada-centric summaries of the diseases, using information that is either commonly-known or described better in medical textbooks. Then, for each of the four main conditions profiled—diabetes, inflammatory bowel disease, fibromyalgia and chronic fatigue syndrome—he concocts a “collective case study as recounted by a fictitious wounded storyteller”. He says that by melding respondent testimony from qualitative interviews with those in blogs, he provides “exemplary case studies”. Whilst this is a legitimate method, his cases read as hackneyed stereotypes rather than crucial studies of everyday lived experiences. The major points he explores—which revolve around the tensions arising from a chronic health problem—are, whilst true, well known to anyone who has spent any time thinking about such issues. These include: the tension between “carrying on” (acting healthy) and “giving in” (outing yourself as sick); the tension between your old and new selves after the onset of illness; and the tension between what Goffman called frontstage versus backstage behaviour for those with invisible illnesses. But for a book ostensibly about centring dismissed voices, it is remarkably lacking in analysis that takes account of power, marginalisation and how axes of oppression such as sexism, racism and classism intersect to make some people especially sick and especially unheard. Segall uses Frank's term “wounded storytellers” incessantly and yet we finish the book feeling we still have not heard one real wounded story from one real wounded teller. The subject is important and the biological and biographical details of people with these hidden conditions do need intense anthropological and scientific investigation. Understanding untreatable conditions and how they affect people should be one of the major priorities of health research in the coming years. It would help everyone—doctors would feel more efficacious, patients would feel more heard and health systems would save lots of money and so it is laudable that Segall raises our attention to this often-dismissed patient group. However, I put the book down feeling disappointed and wanting much more. How could a book on hidden illness published in 2023 not once mention long COVID, which affects about 10% of those who contract COVID and which appears to be a sister syndrome of myalgic encephalitis (ME) (Choutka et al. 2022)? Indeed, I recently learnt much more about ME from one blog entry by de Canson (2024), a scholar who is often bedbound with this condition, than from Segall's fictitious case study on ME. De Canson's blog relates the shocking political economy that results in ME being not merely a contested illness but what she calls a “controversialised” illness. For a book length exploration of this topic, I would strongly recommend Meghan O'Rourke's “The Invisible Kingdom” (2023), which narrates the author's odyssey through the mire of unexplained symptoms in urgent and well-crafted prose. It combines scholarly reflections and personal testimony that gives readers a well-rounded view of why these illnesses need much more attention. O'Rourke and de Canson remind us of the value of hearing the voices of eloquent people living with hidden illnesses.
Neil Singh (Thu,) studied this question.