Art and Illness Symposium: What does illness feel like?

For the vast majority of us, illness is where life and death meet. It’s a guarantee that even if we ourselves don’t get seriously sick soon one of our loved ones will. Knowing a little of what to expect and trying to imagine that will prepare us and help us be more compassionate if our mother, say, screams random obscenities at us. Or we ourselves might find strength knowing that this indescribable agony is shared with countless others. I know it did for me. I hope this post may be of some value to even one person who may feel confused or misunderstood right now. The speakers gave so much of their time to the symposium (more here) that I hope to do a little justice to them here.

Illness vs Disease

At the Saturday session, David Alpers gave a hugely extensive overview of the culture and art expressions of illness. The crucial point of his talk was that the experience of the patient must be valued as real, and listened to. He quoted Kleinmann’s definition of illness as the “innately human experiences of symptoms and suffering”. Disease is the medical description, found in text books and without reference to the specific individual. Illness relates to the sick person, how they suffer, the perceptions and reactions of people around them and the view of their culture to that condition…The above diagram takes a cue from Aoife Lowney’s Total Pain. Illness is far more than a collection of symptoms.

The difficulty of imagining illness in the minds of the healthy

Fergus Shanahan, key organiser and Professor of Medicine at UCC in his opening speech described the difficulty that healthy people have in understanding the what it’s like to be ill. That, he says, is the reason why we need art. Alpers quoted William Styron on depression: ‘… incomprehension has usually been due not to a failure of sympathy, but to the basic inability of healthy people to imagine a form of torment so alien to everyday experience’.

From having a life to being a body in pain

‘Pain’ is far more than unpleasant visceral sensations. One’s existence and identity becomes dominated by the body. The poet John F. Deane who spoke on the Friday evening is a widow and father of lupus sufferers
. A line of one of his poems struck me: “…reduce your creatures to a quivering meat”
. Aine Lawlor, opening speaker and Morning Ireland broadcaster, remembered her times with breast cancer. She
 told how she went from being ‘empowered’ to ‘being a body
’. Later she said that just as the best politicians are those who know what failure is like, the best doctors are those who know what pain feels like.

The terror of illness: a state of uncertainty and unpredictability

The trajectory of an illness is devastating in it’s refusal to be project managed. There is pain, and then there is the terror of not-knowing what will happen next. At the roundtable discussion, it was mentioned by one of the consultants that despite knowing more about disease there is a sense of futility.

Time in slow-motion and being in isolation

The velocity of the ill, 
however, is like that of the snail.
Emily Dickinson

Time slows to an unbearable pace. Elisabeth Tova Bailey when bed-bound over decades described how watching a wild snail gave her insights into the passage of time. Isolation is a word that came up repeatedly in the symposium. Tony Judt‘s description of a “prison without parole” really captured the sense of a body trapped and restrained, helpless and disempowered: “Helplessness is humiliating even in a passing crisis…”  A social aspect of isolation was described by Peter Whorwell, a specialist in Irritable Bowel Syndrome. Patients coming to his Wednesday clinics are totally embarrassed and humiliated by the symptoms of their condition. Kay Jamieson touched on the social stigma that surrounds mental health problems.

It is hopelessness even more than pain that crushes the soul.
William Styron

Unbearable Loss

Loss is loss, and nothing is gained by calling it by a nicer name
Tony Judt

It doesn’t take much to imagine how devastating the loss of independence or degraded physical functions are, nevermind the uncertainty around them. Kay Jamieson spoke of the fear of losing the trust of her professional colleagues or clients when disclosing her bi-polar. Those with untreated psychiatric conditions risk losing the trust and friendship of those around them. The depressed lose self-esteem to a crippling extent. Listening to the illness narratives, I realised that loss of hope in a future is a major loss. How can we gather the strength to keep living without that?

Spiritual distress: Re-evaluation of one’s former life and identity

Aoife Lowney spoke of her experience working in a hospice with a young man who had a brain tumour. She listed the
 spiritual distress features as
 anger, resentment, depression, apathy, guilt, confusion, anxiety and powerlessness and explained that for those with terminal diseases there is no “future” as we normally take for granted. The totality of a personal narrative is now in the past. Facing the reality of death, the patient may want to leave something of themselves behind. There is often a re-evaluation of time and of the future. Aine Lawlor mentioned that as she is in permanent remission, time for her is measured differently: “How many Christmasses do I have?” It takes on a new quality and is more precious. Iarla O’Lionard performed on Friday and described how music’s “fabric is time… to listen to music is to understand time… ” Music helps our “capacity to deal with change” – I guess illness is the most forceful kind of change.

Summary

The main characteristics of illness experience I found from the symposium were:

• Pain
• Reduction of self to a body
• Uncertainty and unpredictability
• Changed perceptions of time
• Isolation
• Loss
• Spiritual distress
• Re-evaluation of life

Sources at the symposium for this article

1. David H. Alpers gave a wide and detailed overview of the culture, experience and expression of illness. Amoung many sources were three illness narratives in literature: William Styron’s Depression in Darkness Visible, Elizabeth Tova Bailey’s ME in The Sound of a Wild Snail Eating, and Tony Judt’s ALS in Night.
2. Aine Lawlor, broadcaster of Morning Ireland gave the opening speech and gave the story of her breast cancer.
3. Dr. Peter Whorwell related the experiences of those with Irritable Bowel Syndrome.
4. Bi-polar was vividly portrayed by Kay Jamieson, professor of psychiatry at John Hopkin’s and in her book Touched by Fire.
5. Aoife Lowney described the story of how a brain tumour patient coped by using web 2.0 to build narratives and leave a personal legacy.

Other sources of interest

• Virginia Woolf’s 1930 essay On Being Ill
• Susan Sontag’s Illness as a Metaphor
• Lisa Appignanesi’s Mad, Bad And Sad:A History of Women and the Mind Doctors from 1800
• Bronnie Ware’s Top 5 Regrets of the Dying

Please comment!
You are warmly welcome to add further characteristics I have missed, and any comments to clarify or questions are also invited.

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How can illness be communicated in the arts and humanities?