Experiences of Chronic Illness

• 15 million people in England have a long term condition.
• Chronic illness experience prevalence is linked to…

  Age & socio-economic status
• What are the key challenges of long-term conditions?

  Chronic health problems

  Lack of a 'cure' - controlled by medication and/or other treatments

  Multi-morbidity (2 or more LTCs)

  Uncertainty - obtaining diagnosis, how & when the illness will progress

  Requirement to adapt & live with the illness

  Coping with situation

  Managing demanding regiements

  Stigma
• What is the importance of a diagnosis?

  Legitimacy of a condition impacts…

  • access to treatment & care
  • how others react towards & view the sufferer
  • links back to discussions on the sick role & definitions of health & illness
• What is the 'diagnostic limbo'?

  Pathway to diagnosis may take a long time

  • non-legitimate conditions & medically unexplained symptoms
  • also difficult to diagnose conditions (e.g. genetic conditions)
• What are contested conditions?

  Medically suspect because symptoms not associated with any known physical abnormality

  Physician may not recognise or acknowledge them as distinctly medical
• What is the adaptation & management after diagnosis?

  Managing the unpredictable nature of symptoms

  Unpredictable nature of disease progression

  Stigmatising & embaraasing symptoms

  Demanding, complex & stigmatising treatment
• Chronic illness disrupts identity & self.

  Leads to changes in the way individuals understand & think of themselves & their position in society.

  Can lead to 'loss of self' and 'a crumbling away of former self images'
• What is identity?

  The distinctive characteristics of a person's character or the character of a group, which relate to who they are and what is meaningful to them
• What is narrative reconstruction?

  When faced with a chronic illness, people undergo a process of narrative reconstruction

  -> routine way in which we make sense of events in our life
• Is chronic illness always disruptive?

  Not always
• What is stigma?

  Negative attitudes and beliefs towards individuals or groups based on certain characteristics or traits.

  
  

  Stigmatising attributes vary across time & place. Stigma does not reflect something intrinsic to the stigmatised individual but reflects the values of those who stigmatise them
• A label (e.g. diagnosis, physical attribute, behaviour) that invokes a negative social reaction -> stigma
• What is discrediting stigma?

  Visible or known stigma

  (e.g. use of wheelchair)
• What is master status?

  Any status that overshadows all others of a person in social situations. Can be positive (e.g. important job), negative (e.g. chronic condition) or neutral
• What is discreditable stigma?

  Differentness is not immediately apparent (e.g. HIV positive)

  Can be managed or hidden to avoid discrediting the person's identity

  Can become discrediting if people find out

  Living under constant exposure can be very stressful
• What is enacted stigma?

  External or actual stigma, first-hand experience of unfair treatment by others
• What is felt stigma?

  Internal or self-stigmatization
• What are the different strategies to manage stigma?

  Passing - attempt to pass as 'normal'

  Covering - attempt to cover or play down the conditions (discrediting stigmas)

  Withdrawal - into stigmatized group
• Why are certain chronic conditions stigmatised?

  If cause is perceived as the bearer's responsibility (e.g. obesity, lung cancer, alcoholism)

  Conditions that are perceived as contagious (e.g. HIV/AIDS) or to place others in danger (e.g. Schizophrenia)

  When a condition is readily apparent to others and is perceived as repellent, ugly or upsetting (e.g. epiliepsy, Parkinson's disease)
• How does stigma on chronic illness impact people?

  Less likely to seek advice & treatment

  Pts may be refused treatment & symptoms not acknowledged

  Over-use of contested illness diagnosis to appease pts who need a diagnosis

  Funding to stigmatised conditions (usually less)

  Access to disability benefits

  Lack of understanding
• Illness is not exclusively a physiological process, it is also a social experience