Theme 2

• Illness narratives and identity


  How identity shifts in the face of an illness
• Case study: 23-year-old female student


  • Training to become a doctor/therapist/pharmacist
  • Diagnosed with multiple sclerosis
  • Good athlete
  • Excel in school
  • Hard worker
  • Dreams of succeeding in life
• Consider


  1. Her identity before the diagnosis

  2. Facing her new identity (after the diagnosis)

  3. Bodily reactions in response to the diagnosis

  4. Emotional response

  5. Thought processing

  6. Family/societal response

  7. Future prospects

  8. Meaning-making

  9. Type of questions wondering about?

  10. Stage of the illness

  11. Treatment options
• Multiple Sclerosis (MS)


  • Lifelong, incurable, degenerative disorder that affects the brain and spinal cord
  • Causes: Unknown, Body immune system attacks its own tissues
  • Main symptoms: fatigue, difficulty walking, vision problems, problems controlling the bladder, numbness or tingling, muscle stiffness and spasms, problems with balance and co-ordination, problems with thinking, learning and planning
• Case study illness narratives

  • May view her illness in vastly different ways
  • View her life as one with a downward trajectory
  • Illness offers an opportunity for personal growth
  • Experience a breakdown in emotions and physical body
  • Loss of identity as an active athlete
  • Illness can serve as an epiphany/a wake-up call
• Illness narrative


  • Allows her to re-write the self-narrative
  • She may narrate herself as a failure (especially when illness interrupts education)
  • She may narrate herself as a woman with choice (positively or negatively live with the disease, though she was given no choice in getting the disease)
  • She may resist to become a medical "case" study
  • Negotiating for balance of being healthy and ill
• Strategies to manage her illness

  1. Freeing her mind of the constraints of the past, and

  2. Forging a new life based on different principles (focused on self-development and pleasure)
• Any illness constitutes a disruption and a discontinuation of an ongoing life process
• Acute illness


  Has only a temporary significance in our lives (causing transitory and limited disruption)
• Chronic illness


  Usually changes the very foundation of our lives because the illness creates new and different life conditions
• The range of options no longer seems so wide and diverse, forced to look at the future from a totally different angle
• The past acquires new meaning (as part of lived life), the illness may seem to lack all connection with earlier events, and it may disrupt our sense of continuity (If the disruption/split is not restored, the fabric of our lives may be shredded)
• Illness narratives


  • Are "patients' stories" of living with an illness
  • Offer an opportunity to knit together life events, construct a new context to fit the illness disruption
• Stories are necessary to

  1. Explain how an individual fell ill

  2. How the illness presents

  3. How the illness has impacted the individual

  4. How the individual coped or is coping

  5. What was/is important for finding their way back to thriving again?
• Illness narratives serve the function/purpose to

  • Construct an illness world (there's a disruption or disintegration in our world)
  • Reconstruct one's life history (Individual is forced to question their identity, competence, and life projects, "Loss of self" (particularly in connection to chronic illness), Loss is accompanied by changes in lifestyle (disability, declining capabilities, sensitive to certain types of situations), Create continuity, orient ourselves by interpreting the illness for new meaning)
  • Explain and understand the illness (The illness event poses a series of questions for the individual: Why me? Why was I the one afflicted? How will the illness affect the functioning of my body? To what extent am I responsible for this situation or whether there were causes outside my control? Is this an inherited disease? Did I have too-high expectations of myself and my abilities (i.e. academic career and social success), We seek to understand the causes of the illness and to relate the illness to our personal lives, We also seek to establish some kind of practical relationship to the illness (to deal with the practical problems caused by the illness))
  • As a strategic device (To self-manage the illness or to excuse, explain or disclaim any responsibility for their actions/behaviour (why I am succeeding or failing))
  • Transform individual experience into collective experience (Individual experiences the illness through the narratives of others diagnosed of same illness, others able to articulate same or similar experiences)
• Social determinants of health (SDoH)


  Differences in SDoH and their influence on health
• Self-study Exercise


  1. Explore the WHO framework on social determinants of health

  2. What are social determinants of health?

  3. Their direct impact on individual health

  4. Their impact on public health

  5. The extent to which public interventions can mitigate these influences
• Health and illness


  Social constructions
• Physical and mental conditions

  • Considered healthy or ill conditions only if they are defined as such by a society and its members
• It is important to consider how and why people form their varying views about health and ill-health
• Through life experiences and interactions, we

  Gain and use knowledge to form understandings and beliefs about different things
• Perceptions of health and illness

  An individual's picture of what health/ill-health means, how it looks, and what they recognise as good or poor health
• Factors that shape and influence individuals' perceptions of health

  • Education
  • Family
  • Culture
  • Personal experiences
• It is important to consider who sets the criteria that determine whether an individual is healthy or not
• Perceptions of our own health or others are often based on appearances and physical health measures
• Our judgments about the health status of others are significantly shaped and influenced by a range of factors
• We hold stereotypical beliefs about specific groups of society, and this may limit our ideas about their health status
• Implications of perceptions of health and illness

  For the individual and for society
• People's perceptions of health


  Significantly influence their lifestyle choices and health behaviours
• Perceptions of health


  Have the potential to reinforce stereotypes
• Accurately assessing our level of health assists us to be proactive about our (patients) health and take appropriate action to address health concerns
• Incorrect distorted assessment of our (patients) health status, could lead to health behaviours that are likely to harm overall health and well-being
• At a societal or policy level, emerging areas of health concern may be identified, risk factors that contribute to ill-health maybe determined, and health promotion, prevention or intervention strategies towards population groups most affected can be targeted towards
• Conflicting perceptions may arise on health issues that should be given priority, and insufficient funding or limited budget allocation for health concerns to meet specific health needs
• Individuals who feel that funding and resources have been incorrectly allocated may feel resentful and disempowered
• Social construct of health and illness

  Our different health perceptions are largely influenced by the social, economic and cultural conditions of our families and the society we live in
• Factors that play a role in our social construct of health

  • Socioeconomic status
  • Geographic location
  • Cultural background
  • Gender
  • Age
  • Level of education
  • Community values and expectations
• These factors have an influence on our expectations, understanding, ability, value, choices and responses related to health
• Socioeconomic status


  Linked to levels of income, education, employment and occupation
• People from lower socioeconomic background experience poorer health outcomes, suffer more illnesses, have more risk factors for ill-health, and have less control of their own destinies and poorer levels of emotional health