13.3 Experience of chronic illness

Question 1

Explain the social underpinnings of illness

Answer 1

• Not only a natural phenomenon:
  
  • Different in people (cultures)
    
    • In their definitions of illness
    • The actions they consider and take
      
      • e.g. health care

Question 2

What are the most common long term condition problems?

Answer 2

• Cardiovascular
• Musculoskeletal
• Depression
• INCREASE in those with co-morbidities

Question 3

What are the leading causes of death?

Answer 3

1. Cardiovascular diseases
2. Cancers
3. External causes e.g. accidents, suicides

Question 4

Is there a link with chronic illness experience?

Answer 4

• Yes there is a link in age and socio-economic status

Question 5

What are the ‘key problems’ with long term conditions?

Answer 5

• Lack of ‘cure’ (medication and/or treatment)
• Multi-morbidity (2 or more long term conditions)
• LOSS OF SELF - a crumbling away of self images
• Uncertainty (getting a diagnosis andd how and when the illness will prgress)
• Adapting and living with illness (for family too)
  
  • Discontinities and changes in:
    
    • Lifestyle
    • Physical appearance (change)
    • Social roles (family impact, loss or change of important roles)
    • Relationships
  • Stigma
  • Demanding regiments

Question 6

Why is the legitimacy of a condition important?

Answer 6

• Impact on:
  
  • Access to treatments and car
  • How others react towards and view the sufferer
  • The identity and self-perception of sufferer

Question 7

Explain the effects of uncertainty in the chronic illness

Answer 7

• ‘DIAGNOSTIC LIMBO’ - pathway to diagnosis takes a log time
  
  • When someone has non-legitimate condition and medically unexplained symptoms (harder to diagnose e.g. geneticc)
  • Congested conditions (suspect as symptoms not associate with any known physical abnormality)
• Managing unpredictable nature of symptoms and disease progression
• Stigma and embarassig symptoms and treatmentse.g. colostomy

Question 8

Explain what is meant by a chronic illness as ‘biographical disruption’?

Answer 8

• Refers to the disruption and distabilising, questioning & reorganisation of identity after the onset of chronic illness.

Question 9

What is meant by identity?

Answer 9

• 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’

Question 10

When people are faced with a chronic illness people undergo aa process of narrative reconstruction, explain this

Answer 10

• Narrative reconstruction - the routine way in which we make sense of events in our life
  
  • Patient tells a ‘story’ of part of their biography in order to make sense of their lives
  • It can be a way of coping with the disruption that the chronic illness may bring

Question 11

Is chronic illness always diruptive?

Answer 11

• NOT necessarily can be seen as a normal crisis or as a continuity if expected
• NOT helpful if born with condition or developed at a young age (impact on family and friends)
• Age, experience and life context shape illness meaning and experience
  
  • People expect to get chronic illness in old age

Question 12

Explain stigma and ‘stigmatised illness’

Answer 12

• It is seen as a label that causes negative social reactions
  
  • _​_Is ‘an attribute that is deeply discrediting’
• Stigma can be brought on by race, sexuality, criminality, disability

Question 13

Explain the types of stigma

Answer 13

1. DISCREDITING STIGMA
   
   1. Is a type of visible or known stigma e.g. facial disfigurments and use of a wheelchair
2. DISCREDIBLE STIGMA
   
   1. Differences not immediately apparent e.g. being HIV positive
   2. Can be managed or hidden to avoid discrediting thee individual (can leadd to discrediting stigma if people find out –> live under constant threat of exposure)
3. ENTACTED STIGMA
   
   1. External or actual stigma, first-hand experience of unfair treatment by others e.g. epileptic and telling friends and when friends find out they dont want to speak to set individual
4. FELT STIGMA
   
   1. Internal or self- stigmatization; fear an individual may have that they and their condition will be negatively viewed e.g. someone with a Sexually Transmitted Infection (STI) attending a sexual health or genitourinary (GUM) clinic
   2. Causes more anxiety and unhappiness than ENTACTED stigma

Question 14

What does master status mean?

Answer 14

When a person is defined by their condition in the case of long term illness (schizophrenic rather than a person with schizophrenia) –> (can be religion, gender, illness, job –> can be positive or negative)

Question 15

What are the strategies of managing stigma?

Answer 15

• PASSING
  
  • Person may attempt to pass as ‘normal’ (applies to discreditable stigmas)
• COVERING
  
  • ​With discrediting stigmas a person may attempt to cover or play down the condition
• WITHDRAWAL
  
  • ​May withdraw into stigmatized group

Question 16

Why are certain chronic conditions stigmatised?

Answer 16

• If the cause of the condition is perceived to be the bearer’s responsibility (e.g. obesity, lung cancer, alcoholism)
• When conditions 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. epilepsy, Parkinson’s disease)

Question 17

What are the practical implications of a chronic illness?

Answer 17

• Seek advice and treatment: fear to be ridiculed, mistreated, stigmatised or blamed
• Access to treatment: patients refused treatment and symptoms not acknowledged if not found to be linked to a biomedical disease (contested illnesses)
• Over-use of contested illness diagnosis to appease patients who need diagnosis but whose symptoms don’t link to disease
• Funding for stigmatised or contested conditions
• Access to disability benefits
• Understanding of illness behaviours
• Shaping policy and practice for LTC management to better reflect the social nature of illness e.g. favouring social-psychological solutions over biomedical