A sharp interrogation of why we retreat from other people's illnesses, 2024, New Scientist

In 1979, when endocrinologist David Rabin was diagnosed with an incurable neurodegenerative condition, he understood only too well the pain ahead. What he didn’t anticipate was the response from his medical colleagues at Vanderbilt University School of Medicine in Tennessee, who were deeply discomforted by his diagnosis to the point they started avoiding him. On one occasion, Rabin fell and a passing colleague pretended not to see him sprawled on the ground as they walked past.

In 1982, two years before Rabin died from amyotrophic lateral sclerosis (ALS), a type of motor neuron disease, he published an article about the “extraordinary” social effect of his illness in the New England Journal of Medicine. Even his wife, also a medical doctor, and his daughter, both of whom co-wrote the article, had become isolated from him, compounding the impact of his devastating illness. Together, they called it “the pariah syndrome”.

A sharp interrogation of why we retreat from other people's illnesses

How well do we look after people who are seriously sick? Astonishingly, research is scant – which makes Neil Vickers and Derek Bolton's ambitious new book, Being Ill, very welcome

By Elle Hunt

9 October 2024

People who are very sick can be reduced to their diagnoses by others

Being Ill
Neil Vickers and Derek Bolton (Reaktion Books)

In 1979, when endocrinologist David Rabin was diagnosed with an incurable neurodegenerative condition, he understood only too well the pain ahead. What he didn’t anticipate was the response from his medical colleagues at Vanderbilt University School of Medicine in Tennessee, who were deeply discomforted by his diagnosis to the point they started avoiding him. On one occasion, Rabin fell and a passing colleague pretended not to see him sprawled on the ground as they walked past.

In 1982, two years before Rabin died from amyotrophic lateral sclerosis (ALS), a type of motor neuron disease, he published an article about the “extraordinary” social effect of his illness in the New England Journal of Medicine. Even his wife, also a medical doctor, and his daughter, both of whom co-wrote the article, had become isolated from him, compounding the impact of his devastating illness. Together, they called it “the pariah syndrome”.

Rabin’s distressing story informs Being Ill: On sickness, care and abandonment, an ambitious new book interrogating what turns out to be a deep-seated social aversion to poor health. The authors are two professors at King’s College London, Neil Vickers and Derek Bolton, well-placed to use their expertise to pick apart the roots of this ostracism at both the individual and societal level. Vickers is a professor of English literature and the health humanities, and Bolton is an emeritus professor of philosophy and psychopathology.

The book casts an unflattering light on humanity. Care may be a “species activity” (as described by feminist writers Joan Tronto and Berenice Fisher), but it isn’t reliably administered – even to people in demonstrable need or with whom we have a long-standing relationship. Bolton and Vickers point to the Macmillan Cancer charity’s 2017 campaign “A mate with cancer is still a mate”.

But the abandonment of people who are sick isn’t limited to friends shunning friends. According to 2014 crime statistics for England and Wales, say the authors, long-term illness or disability doubles your risk of experiencing domestic violence. A paper they cite found an association between becoming ill and a higher risk of divorce, particularly if the female partner is sick (the research only collected data for heterosexual couples).

Even medical professionals, Vickers and Bolton write, can’t be relied upon to consistently provide care or “meet the experience of the sick other”. The gold-standard response, they argue, entails not just extending compassion to the patient but identifying with them.

Yet often people with serious conditions end up being reduced to their diagnoses or find doctors resist fully engaging with them.

Vickers and Bolton draw together biological, psychological and social factors that influence human interaction to understand why one person might turn against another in their time of need. The lack of adult studies means looking to research on care relationships between adults and infants, and also to sociology.

In seeking compassionate solutions for adults who are ill, they advocate for “mirroring” and “holding”. These are techniques used in child psychology therapy to explore interactions between children and their caregivers, and the wide-ranging effects and consequences of that bond.

It is a persuasive, often powerful framework. We know that humane, compassionate care in many ways determines children’s outcomes in adulthood, but it can be similarly transformative for adults with illness or disability. Even health outcomes can be improved by strong relationships.

Being Ill stands out not only for its original perspective but for the non-judgemental tone of its authors. There are limitations, though, largely to do with the focus on the so-called WEIRD (Western, educated, industrialised, rich and democratic) countries that, to a greater or lesser extent, emphasise good health as an individual responsibility.

But the UK and the US, at least, are home to an ageing, ailing populace. As such, Being Ill suggests, we all have a stake in bridging “this estrangement between the healthy and the ill”, and building more resilient communities to support us.

 

Thanks for sharing @Joan Crawford.

I’d guess we will soon be hearing lots about this book so it’s nice to be in the loop.

I think aspects of this book will resonate due to the cruel treatments endured by the ill. Still think I’ll pass.


There are limitations, though, largely to do with the focus on the so-called WEIRD (Western, educated, industrialised, rich and democratic) countries that, to a greater or lesser extent, emphasise good health as an individual responsibility.

 

For anyone who would like to read the original NEJM article from 1982, it is "Compounding the Ordeal of ALS — Isolation from My Fellow Physicians" (N Engl J Med 1982;307:506-509). Link here (loginwalled, but for those without journal access I also found a free version available here).

 

In some ways hearing that people with MND get ignored while collapsed on the floor, somehow heartens me. If that was me I'd have thought it was because I had ME. OF course in some cases it would be, but it is somehoe comforting to hear that people with so called 'organic' illness get treated like sh1t as well.

lol isnt that where certain BPS people hail from?.... perhaps Vickers & Bolton should 'wander down the corridor' to the CFS clinic... to see their colleagues really dish it out. Although as is so often sadly the case, those who are calling it out in other areas seem oddly blinded to it happening to us.

 

Knowing what MND is like this is…

 

I like the light being shone on the behaviour of others

one thing I noticed the bps ideology gives permission for us that insinuation we might not be right of mind or over-sensitive gives a free pass to people who you realise it was only being frowned on by others if that person told on them that stops them from bullying ill people. Bps gives them permission and it encourages the lies that the victim ‘must just have misheard or been over sensitive’ despite it being deliberate.

I think having an everyone’s invited where the behaviour is shown up is important . So that people can at least stop claiming untruths about themselves and have to look in the mirror.

it’s scary when you think about the jobs these people are allowed to hold too - I think the recruitment tests are wrong these days for these professionals as empathy is a skill of insight not some sympathy add on to control - if you can’t hack it to the extent you think you need to train it out then you aren’t appropriate gif the profession and have the weakness yourself

I’m afraid this guy just saw who people really weee when they thought they could get away with it snd they believed they had nothing to gain or lose from him