chronic illness Flashcards
What is the illness narrative?
A story the patient tells, and significant others retell, to give coherence to the distinctive events and long-term course of suffering
what are key problems of LTCs?
Chronic health problems
Lack of a ‘cure’ - controlled by medication and/or other treatments
Multi-morbidity (multiple LTC’s)
Uncertainty: obtaining a diagnosis; how and when the illness will progress
Requirement to adapt and live with the illness
Brings about changes in one’s life – discontinuities and change
Making sense of and coping with situation
Managing demanding regiments
Stigma
What is diagnostic limbo?
‘Diagnostic limbo’: Pathway to diagnosis may take a long time
Non-legitimate conditions and medically unexplained symptoms Also difficult to diagnose conditions e.g. genetic conditions
Why is adapting and managing after diagnosis hard?
Short-term and long-term uncertainty, demands and implications
- you cant make arrangments
- disease is unpredictable (progression)
- demanding/stigmatising/complex
changed physical appearance
social isolation
impact on family
affecting ones mood, depression
losing physical wellbeing i.e sleep
unemployment
relationship changes
What is a biographical disruption?
Refers to the disruption and distabilising, questioning & reorganisation of identity after the onset of chronic illness.
‘Suddenly, all that narrative, that “biography”, you have constructed for yourself and hope to build for the future is thrown into doubt.’ (Barry & Yuill, 2012:193)
example –>
When I was working I was almost a workaholic. So I thought that I would go crazy sitting at home all day. But I still know how to enjoy things, it’s wonderful having all these days off. Beforehand, you don’t expect that to happen, but I’ve got such nice people around me and I often have visitors
What is identitity
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?
Faced with a chronic illness people undergo a process of narrative reconstruction.
The routine way in which we make sense of events in our life
Patients tell a ‘story’ of their illness as part of their biography in order to enable them to make sense of it in their lives (e.g. how and why it happened to them and what it means for them).
Can be a means of coping with the disruption that chronic illness may bring.
In the aftermath of diagnosis, I found myself on edges and in abysses I have never been to before. But terrible as it was it was never boring. It became a project, a journey, a new way of understanding myself, others and the world around me. There are things I would never have known or experienced if I had not had breast cancer
What is stigma?
an attribute/label (can be a diagnosis,physical attribute, behaviour) that is deeply discrediting
Discrediting Stigma
Visible or known stigma e.g. facial disfigurement, psoriasis, or the use of a wheelchair
(master status is when that persons attribute overshadows all others of a person in a social situation) - e.g. ones job/religion/gender/illness
Discreditable stigma?
Differentness is not immediately apparent e.g. being HIV positive.
Can be managed or hidden to avoid discrediting the person’s identity
Can become discrediting stigmas if people find out
Enacted Stigma?
External or actual stigma, first-hand experience of unfair treatment by others.
‘This is what I’ve found, that whenever I tell anybody that I’m epileptic they don’t want to know me at all. I’ve had friends here, as soon as they know I’m epileptic they don’t want to know me at all’ (Scambler & Hopkins, 1988: 166).
Felt Stigma?
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
What strategies are there to manage stigma?
PASSING
a 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
Why are certain LTC’s/chronic conditions stigmatised?
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)
Summary of lecture:
The body is not simply a biological entity only understood by the natural sciences
People who are chronically ill spend only a small proportion of their time as a patient
Perceptions of the body, what we do with our bodies and how the body is regulated are all influenced by society
Chronic illness leads to ‘biographical disruption’, where the ‘taken-for-granted’ aspects of life and identity are thrown into question
Common themes in the experience of people with chronic conditions: uncertainty, stigma, biographical work/reconstitution of self, managing regimens, communication and support, family relationships
