hcs - 2.12

What is biographical disruption?

-one's sense of self is challenged

-chronic illness negates optimal body function + control

-new found self awareness/ shift in priorities + life philosophy -> disruption of the narratives about the future that people use to understand themselves and the trajectories of their lives

definition of biographical disruption

- when everyday expectations are challenged by the experience of illness

- have to reconstruct a new sense of self and build life around a chronic illness

Sense of self

-self-knowledge a person holds about themselves in relation to roles, activities, relationships, perspectives

How does chronic illness affect sense of self?

-lower life satisfaction

-low mood

-anxiety vs greater appreciation for life

-threat to independence

-identity not consumed by diagnosis

How does chronic illness affect one's relationship with their body

-body feels unreliable/unpredictable

-self-body dualism -> dysfunctional/painful parts of body placed outside of self while parts that function normally taken for granted, given little attention

Episodic disabilities

-unpredictable + fluctuating periods of illness + wellness >> disrupt relationships, life activities, QoL

Issues w/ 'not looking disabled'

-influences how it's socially interpreted

-social affirmation depends on disability being obvious + consistent

-invalidation/fake/suspicion/scepticism -> socially discredited

-disability is devalued + have to persuade others

-unable to meet able bodied expectations> assumed laziness

-accommodations for episodic disabilities not always justified to employers

Relationship between stress and disease

-stress is critical in the development + progression of disease

-stress of undergoing treatments/facing mortality

-physiological process of stress reduces ability to heal/cope/maintain high QoL

Stress and neurodegenerative disease cycle

-stress exacerbates disease via activation of the HPA axis

-elevates corticosteroid levels -> produce symptoms, general adaptation syndrome

-2 parts of cycle: influence of stress on disease, advancing disease disrupts neural + endocrine circuits that mediate the stress response

-neuropsychiatric symptoms e.g. depression, anxiety, insomnia

-therefore stress drives disease and disease causes stress

implications of managing long term conditions: d-pt relationship

-loss of self-control

-vulnerable

-anxiety: vigilance + makes threatening interpretations of info

-depressed: lose compliance + self-destructive behaviours

-anger: can blame illness on clinicans + disempowerment

-forgotten in the system/ not being listened to

What are the challenges of chronic disease?

-responsibility of medical treatment

-continuing obligations to family + society

-coping w/ limitations

-pretending to be cheerful

-unable to enter sick role

MS and sense of self

-onset of MS doesn't automatically make a person question their sense of self -> depends on how much symptoms impact pt's ability to fulfil roles to pre-MS self

How can clinicians help pts maintain a positive sense of self?

-assess which symptoms affect them most + help them reconnect w/ valued interests, roles and activities in an adapted fashion

problem-focused coping

-people take direct steps to confront or minimize a stressor e.g. self medicating for control of diabetes or explaining to friends you're not going to have an alcoholic drink because of your cardiac rehab plan

emotion-focused coping

-attempts to reduce emotional response to stressor

-positive or negative e.g. having a bath to relax vs drinking excessive alcohol or taking our anger + frustrations on clinician

defensive coping

-pts sometimes claim that their illness is not serious or that they have been cured

-particularly problematic for life threatening illness

doctor patient relationship in chronic illness

-long term relationships w/ clinician

-encompass pts dependence on clinicians + pts responsibility for managing their illness independently

-individual approach -> pts individual needs

-ensure pts needs are being met

-help pts use + access support networks that aren't dependent on clinical care