Choices in illness

Sometimes we get ill.

Getting ill means losing one of the most important things we need – control over our bodies. And when this eludes us, we feel stressed – maybe angry, maybe sad, maybe scared.

Illness reveals chaos and contingency as the underlying truth of reality. We never know when we may get ill, or what’s going to happen when we do.

However, as humans we are choiceful: we always have the option to put order into chaos. Thus, we also have choices in how we behave in the face of illness.

Arthur Frank writes about narrative, ethics and experience of illness in The Wounded Storyteller. He talks about four dimensions in which our bodies (ie, our body-minds, aka “we”) will make choices about “how to raise to the occasion” of illness.

The four dimensions of choices in illness

The four dimensions on which to make choices are:

Our relationship to predictability: we seek to exert control over illness or accept the unpredictability of life. Now, of course it’s important to treat the illness and heal the body. However a controlling relationship to the illness can be unhealthy. The sweet spot in this dimension is to accept the illness, while not giving up our life to it.

Our relationship to our own body: we disassociate from our own body (ie, we escape from it), or we associate to it (ie, we seek to actually feel it).

Our relationship to others: we isolate ourselves (ie, monadic) or we participate in relation with others around our illness (ie, dyadic)

Our relationship to desire: we give up a desire for more (more life, more feeling) or keep producing desire (e.g to go on living, relating to others and enjoying ourselves)

The four choices in illness

Consequently, based on our position across the four dimensions we can choose from various types of responses, with the author suggesting four common ones.

Frank makes the point that none of these body types are absolutes; that we are likely to inhabit more than one and flow from one to another as we face illness.

I am calling them choices because I want to stress the point he makes that these are ethical choices we have.

His work alerts us to the traps of modern science: relegating the patient to an object to be cured and a datapoint to be measured. Modern science, for all the real payoffs, makes people into passive patients whose only ethical role is to comply and follow regimes.

His call to action is to empower us to have both: we can have the progress of modern science while allowing us ill bodies to have an active role giving from our abundance of pain and suffering – what he calls the “pedagogy of suffering”. After all, illness is something we all experience, or will do.

In Frank’s system there are three dangerous and counterproductive (even if all too natural) choices, and an ideal choice to aspire to.

Let’s start with the three ones to watch for and finish with the ethical ideal.

Disciplined

A disciplined body is one who gives themselves to an unshakeable faith in the power of the treatment to make the illness go away.

Seeks to control the body: this is their main focus. It fears the contingency as a threat to productivity. Medical treatment, antioxidant diets and rehab programmes become their obsession.

Dissociates from the body by focusing on treatment and regimen, considering “it” only as something to be treated.

Doesn’t relate to others, instead choosing to hyperfocus on this limited aspect of themselves. Others become non-essential allies, supporters or obstacles to their goals.

Desire is not entirely given up, but put aside to focus on the problem of control. Perhaps the only desire, which is mostly lacking, is to be healthy again.

Mirroring

A mirroring body is one that seeks to become the picture of health, to look good like other bodies they idealise.

Seeks to control the body, with a fear of disfigurement.

Associates to its body, however with a focus on appearance, rather than non-judgemental feeling. Mirroring bodies are associated, but with a possessiveness of their bodies with an “I-it” dualistic approach.

Doesn’t relate to others, seeing them purely as an audience. They fear their judgment, seek their approval or crave their admiration.

They still have a desire, although it’s centred on themselves.

Dominating

A dominating body is characterised by co-dependency and displacement of their own anger and fear onto other bodies.

Gives up control to contingency, but without actually accepting it.

Dissociates with their own body, seeing it as an inconvenience.

Uses others to take away their pain, making them responsible or at least co-participatory of their own suffering. They become emotionally abusive as a way to deal with their own difficult emotions.

Gives up desire, instead preferring to complain and victimise themselves.

Communicative

The communicative body is the ethical ideal, empowered by illness to embrace the full meaning of humanity:

They accept the contingency of life without fear

They associate to their bodies intimately, being their blood and their pain as much as they are their thoughts and ideas.

They genuinely relate to others. Not as allies or obstacles but as other human beings. They embrace their role, not as passive sick persons to be treated by doctors, but as wise elders who “bear the mark of pain” and have important stories to tell about how to live with illness.

They produce desire, not only to survive their pain and of bodily pleasures and responsibilities, but also to relate to others and to leave a positive legacy.

Becoming a communicative body

Frank’s gift is the existential encouragement to accept illness and death whilst using it as a positive potential for connection and personal growth.

He proposes the body types as a reflexive tool for monitoring in the pursuit of the idealised communicative body.

In my yet limited experience with illness I recognise how natural it has been for me to embrace disciplined and dominating versions of myself, and how unsatisfactory, isolating, painful that being can be.

Working towards a communicative stance: accepting, patient, relaxed is rewarding and powerful. We may never be too far from choices driven by fear, vanity, or co-dependence, but reflecting on our experience in the face of illness and setbacks can help us live a more fulfilling life.

With thanks to Arthur Frank for such a powerful book.