illness

These resources have been collated to help you explore the concept of illness.

Travel through them or pick out aspects of the collection that specifically appeal.

We have used a question format to aid the use of resources in a tutorial or group teaching session.


What is illness?


We found it difficult to describe the concept of illness in words.

The thesaurus suggests that other words like 'disease', 'condition', 'ailment' and 'incident' can be used interchangeably with the word illness. However, we propose that illness is a unique concept that results from the impact of a disease or condition on an individual. For example, tonsilitis is a disease or condition, but illness is the experience of the person suffering from tonsilitis.

How would you define illness?

Watching this short film might help you.

Here is what we thought:

Illness is:

  • Something that interferes with your sense of wellbeing
  • A loss of capacity and/or function
  • The restriction of options or possibility
  • A state of inability
  • A label given by doctors or society
  • Limitations on quality and quantity of life
  • A loss of control of biological, psychological, or social functioning

Or as Havi Carel says in her excellent book, Illness. Illness is a loss of harmony between the biological body and the subjective/lived experience of it.  


How do we explain and understand illness?


Here is a simple framework.

Illness can be explained and understood from three perspectives:

  1. The naturalistic approach in which illness is explained as biological dysfunction in terms of physical facts. E.g. The effect of an illness will be universal when all other variables are the same. This view had resulted in incredible advances in treatment but excludes the ill person's perspective.
  2. The normative approach explains illness through the collective lens of our culture and society. Whilst it’s helpful to have the societal context of illness it also excludes the personal perspective and can cause people with certain illnesses to be stigmatised.
  3. The phenomenological approach explains illness through the lived experience of the person who is ill.

Combining all three approaches provides a comprehensive view of illness that is most likely to enable you to help your patient.

Let’s use art resources to help understand the three approaches.

The Naturalistic Approach

Four plates from Arthur Hill Hassall The Microscopic Anatomy of the Human body, in Health and Disease from the Wellcome Collection. Image in Public Domain.

Medical school education appropriately ensures students understand the naturalistic approach to explaining illness. This approach leads to the expectation that if all other factors are the same then an individual's experience of illness will be identical. I imagine all doctors will remember patients being referred to as 'the diabetic' in bed 10 or looking at bottled pathological organs. The picture is not complete without the patient's experience.

Normative Approach

Anne Fadiman’s book The Spirit Catches You and You Fall Down, is a masterful account of the conflict that arose between clinicians in an American Hospital and a Hmong child from Laos who suffers from epilepsy. The American doctors diagnosed an illness that they believed needed treating, as proven with an EEG, but the child’s family believed the fitting was a gift from their gods; the spirit catches her, and she falls down.

Can you think of other illnesses that are viewed in different ways by different cultures?

Health beliefs can evolve over time, and this is not always linked to new scientific knowledge.

How has society's perspective of mental illness changed over the years?

Is excessive gambling a behavioural issue or an illness?

Benefits Supervisor Sleeping, Lucian Freud, 1995. FairUse

Being overweight can cause ill health, but is the process of becoming fat an illness?

Who decides? Science or society?

Phenomenological Approach

The art of the consultation in General Practice is to explore the patient’s understanding and experience of illness. This is often distilled into a series of questions, which are focused on establishing I.C.E. (the patient’s ideas, concerns and expectations) Taking time to hear the patient’s story can be a more fluid and satisfying way of understanding their illness experience, this approach has been described as narrative-based medicine.

Shanali Pevera’s life as a junior doctor changed path when she developed a rheumatological condition. She took up digital art to help her make sense of her illness experience asking herself the question what does my lived experience of illness look like? I was introduced to Shanali's work at the Creative Health for Wellbeing Alliance conference where she spoke about her experience of illness, do take a look at her website

Stolen Moments - When skies are grey, Shanali Perera

What does her picture tell you about her illness experience?

Doctors should remember that  ‘it is as important to know the patient who is suffering from the disease as the disease the patient is suffering from.' Dr Willima Osler. 


What about illnesses that do not yet have a scientific explanation?

We need to use all three perspectives to be able to understand the concept of functional illness. 

Susanne O’Sullivan, consultant neurologist is an expert in functional illness.

Her book is a collection of expertly narrated international stories about functional illness. In a world where what we see down a microscope or read reported in terms of mmol/l shapes our understanding of illness, O’Sullivan reminds us that external events in our communities and culture also have the potential to shape our experience of illness.  The book is an interesting read for non-medics as it explores many topical health stories, such as the Havannah Syndrome in Cuba. It’s an essential read for any clinician or medical student as the concept of functional illness does not fit neatly with the dogma of western medicine, is often excluded by clinicians from the differential diagnosis and is rarely accepted by patients. It is an easy read and a great resource for a tutorial or teaching session.

One of the stories is about  ‘The Sleeping Beauties’ who are a group of refugee children who on arrival in Sweden, a place of safety, fall asleep, unable to be woken, perhaps protected from the reality of the events that led them to become refugees. Their plight continues, untreated and unresolved, cared for by family and local the local community, recovery only occurs when the children receive settled status.


What does illness look like?


What is it about a patient's appearance that communicates they are suffering from an illness?

The Sick Rose, Image from the Wellcome Collection. Image in Public Domain

This etching is of a young woman from Vienna who died of cholera. She is depicted when healthy and then four hours before death.

Is illness always visible?

What picture would you choose or is there a poem, song or piece of music that you think conveys the concept of illness?


How do you know if someone is ill?


Doctors are trained to recognise illness. We listen to the patient's story, assess their signs and symptoms and sometimes arrange and review investigations before we confirm an illness.

How does a person convey their ill-health to other people?

Self-Portrait between the Clock and the Bed by Edvard Munch 1940/1943 Munch Museum, Oslo. Image in Public Domain

Take time to interpret the picture in the same way you would try to 'read' the visual appearance of a patient in a consultation.

How does Munch appear?

In his self-portrait, he uses allegory to convey his ill health. 

Munch places himself, inert between the clock and the bed (two artistic symbols of death), indicating to the observer that he is approaching or waiting for death. 

In the shadow of the door, there is a cross, which is another symbol of death.

His life (the lighter elements of the picture containing his life's work) are behind him.


Some illnesses (and disabilities) produce very visible signs of illness, what problems does this present for the person?

What about people who show no outward sign of illness, and might actually look well despite feeling ill?


What causes illness?


Take a few minutes to reflect on this poem by New Zealand doctor and poet, Glen Colquhoun, taken from his anthology of poems for doctors (a great teaching resource)

 

 

 

 

 


The Heart Attack

The heart is not attacked 
by red Indians clinging underneath
the bellies of their ponies.
The heart is not attacked by
kamikaze flying their exploding planes
onto its burning decks.
The heart is not broken by the slippery hands of love.
The heart is not squeezed like
ripe lemons into a clean glass.
The heart is not beaten by 
arrangements of its soft belly
around a hard fist like a glove.
The heart is not stabbed by bayonets
or chainsaws or carefully sharpened kitchen knives
slipping their cold steel cleanly between its ribs.

The heart stops simply like a blocked toilet

While someone unsuspecting is opening the
newspaper or reading poetry or staring quietly at
the pictures in the calendar on the back of the door.
Sunday seems a good day for fishing.
A pair of trousers fall to the floor.


Discuss this image.

John Bull defending Britain against cholera 1948 Wellcome Images

Cholera is personified in an Indian immigrant. Are there parallels between this image and the way Chinese people were ostracised during the Covid 19 Pandemic?


Here is our list of the current causes of illness:

  • Bacteria
  • Viruses
  • Poisons
  • Medication
  • Environment
  • Behaviours
  • Poverty
  • Accidents
  • Violence
  • Cultural norms

What have we missed?

What about the expression 'he died from a broken heart'? Can emotions cause illness?

Many people come to terms with emotional pain by writing poetry.

He would not stay for me, and who can wonder by A E Housman

He would not stay for me, and who can wonder?
He would not stay for me to stand and gaze.
I shook his hand, and tore my heart in sunder,
And went with half my life about my ways.


There are many historical explanations of illness that have been disproven by science, what comes to mind?

The causes of illness are not just influenced by scientific discovery. The influence of culture, family, and life experience need to be appreciated when exploring illness. 

There may be stories you were told as a child about the illness that influenced your behaviour. One of my children was told by a friend's mum that sitting on cold floors gave you piles! Can you recall any explanations for illness from your childhood?

In the UK there are examples where people have been classified as suffering from an illness purely because their behaviour does not conform to what contemporary society expects.

Can you think of any examples?

Sebastian Barry's book The Secret Scripture tells the story of Roseanne McNulty who was considered ill and committed to a mental hospital as a young adult purely because she conceived a child out of wedlock.


What is the feeling of illness?


How do you feel when you look at this picture by Magritte? (I don't have permission to use it on the site so please click the link)

Personal Values by Magritte

When a New York dealer unpacked Magritte's painting Personal Values, he found the painting so difficult to look at that he wrote to the artist seeking an explanation. 'I am so depressed that I cannot yet get used to it. It may be a masterly piece but every time I look at it I feel ill.'

Magritte replied, 'well this is proof of the effectiveness of the picture, a picture which is really alive should make the spectator feel ill.'


Strength by Anita Kunz (picture from Twitter)

As part of the Framing OFF Through Art initiative, artist Anita Kunz created a piece of art for Jennifer Parkinson, who was diagnosed with Parkinson's Disease at 32. In what way do you think this painting conveys how Jennifer feels about her illness?


The Wounded Deer, Frida Kahlo 1946 Image shown under Fair Use license

How might you interpret this painting by Frida Kahlo?

Maybe she sees a similarity between her own struggle with pain and that of the deer’s constant struggle to survive being hunted? 

Is the feeling of illness suffering?


Think about the last patient you saw who was ill and try writing a short poem or piece of prose to reflect how you think they felt. This simple task builds empathy.


What is the impact of illness?


Read and discuss this letter from the Guardian.

Letter published in Guardian 23/3/2022

Illness is frequently associated with loss. Loss of-  wholeness, certainty, control, freedom, the familiar world. (Toombs- Five essential features of illness)

Illness often carries stigma leading to misunderstanding and isolation.

C4’s It’s A Sin by Russell T Davies follows the story of a group of friends whose lives were impacted by AIDS.


Surprisingly people do describe some positive aspects of illness, what might these be? 

Are you aware of the concept of secondary gain, how might you describe this?

Do you become your illness? A concept reinforced by clinicians referring to patients by their illness e.g.  ‘the diabetic patient’

People often refer to their illness as ‘other’ and sometimes personify their illness and give it a name.

Sit and think about the last patient you saw who had a chronic illness, what did you learn about the impact of illness on their life.


The impact of illness is more than just the experience of symptoms. 

Who has control over the impact of illness?

Not just the patient.

Other people's behaviour and societal rules have an impact on the experience of illness; family, friends, doctors, public health, Mental Health Act, DVLA, Government, school, and society.

You have probably read books and watched films that feature the impact of illness, many of the resources on other pages of this website have been curated to explore the impact of specific illnesses on people's lives. 

The Island by Victoria Hislop tells the story of islanders infected with Leprosy. Before the advent of antibiotics people who became infected were banished to a neighbouring island to live in isolation.


picture of book by TolstoyThe Death of Ivan Ilych by Leo Tolstoy is a powerful short story that can be used to good effect in reaching about the impact of illness.


What is your own experience of illness?


'Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.'  Illness as Metaphor by Susan Sontag.

I read her book to help me make sense of my own illness experience and it inspired me to write this poem.

The line of illness

The line
is invisible
to doctors
who think
they understand
the pain
the fatigue
the loss
of identity
that is illness

The line
is a border.
Patients 
have
no visa
no passport
to cross
back to
the other side
that is health.


When Breath becomes Air, is a non-fiction autobiography of a neurosurgeon, Paul Kalinithi's experience of living with and dying of lung cancer.

'The tricky part of illness is that, as you go through it, your values are constantly changing. You try to figure out what matters to you, and then you keep figuring it out. It felt like someone had taken away my credit card and I was having to learn how to budget. You may decide you want to spend your time working as a neurosurgeon, but two months later, you may feel differently. Two months after that, you may want to learn to play the saxophone or devote yourself to the church. Death may be a one-time event, but living with terminal illness is a process.'


Who is responsible for managing illness?


This is clearly a complex question, with many people playing different roles.

The patient should be at the centre of the picture.

How does this photo of Frida Kahlo help you explore this question?

Frida Kahlo with her orthopaedic cast. Image from Twitter

Frida Kahlo suffered a life-changing accident that resulted in her having to wear an orthopaedic corset and a leg brace. Each time her cast was replaced she decorated it in her own unique style.

We will discuss the role of clinicians and carers in more detail in a different section of the website.


Coping with illness


Many illnesses are chronic and life-changing.

People need to have the support and resources to be able to live well with illness, to be unrecovered but thriving.

We will cover this in detail on the page 'Treating Illness' & 'Recovering from Illness' (in development)


So now we have considered illness we are left with the question; what is health?


Panel D9 of the Quaker Tapestry Scheme True Health

If we are fish then is health is the water we swim in, we don’t notice it until it disappears.

We will continue this discussion on another page 'Health' (coming soon)

 


We are very grateful to all the artists whose work we have used on this journey through illness.

We hope we have not reproduced any work inappropriately or misattributed it.

We are particularly grateful to Havi Carvel for her wonderful book on illness.

 

If you have found this page useful do read more and let us know if you have any useful additions to this or other pages on the site. Thank you.


page created December 2021 by Nicola Gill and Beth Jakeman