2. Psychology: PSC and other Chronic Illnesses
Moderator
Jerome Schofferman
Panelists
Fred Sabernick
Linda Waters
Ric Seifert
Heather Whiteman

3. Disease versus Illness
The underlying pathology
Biological
PSC
Illness
The effect of disease on the person
(and the “patient-caregiver unit”)
The experience of being sick
Psychological
Social
Spiritual

4. No one size fits all There is no single psychosocial response to PSC
No right or wrong way
Psychological response varies
Each person’s psychological makeup
Stage of disease
Knowing some of the more common ways people respond might help us understand our own feelings

5. Chronic Illness is a Loss
Grief Response
Disbelief and Denial
Guilt and ?Remorse
Depression
Anxiety
Acceptance
Grief Response
Denial
Anger
Bargaining
Depression
Acceptance
Elizabeth Kubler Ross
Not linear
To and Fro
Patient and Spouse/Partner might be a different phases

6. Chronic Illness: Losses and Threats of Loss
Potential Losses and Fear of Losses
Life as it was
Ability to care for oneself
Long-term disability
Early death

7. “Formal” Psychological Diagnoses
Depression
Persistent and intrusive
Not just sadness
Anxiety Disorder
Post-traumatic Stress Disorder

8. Depression Can occur at any stage of illness
Usually treatable
Important to report any new “mental” symptoms
Discriminate between
symptom of disease
Especially later stages: e.g. encephalopathy
versus depressive illness (vs both)

9. Two Categories of Psychological Response to Illness
Formal Diagnoses
Depression
Anxiety
Post-traumatic stress disorder

10. Anxiety Definition Feelings of worry, nervousness, or unease
Persistent or very frequently recurring
Typically about the future
Fear of the many possible unknowns
Deterioration
Being or becoming a burden

11. Post-Traumatic Stress Disorder (PTSD)
Symptoms related to a traumatic event
Usual definition: a single traumatic event
Re: PSC: diagnosis of a (currently) not curable disease
With chronic illness: frequent potential reinforcers
At times of testing
Especially interventional testing
While awaiting results
At points of worsening

12. Reactions to Chronic Illness
Acceptance
Accepting the reality: a new reality
Does Not mean conceding or giving up
It‘s “what I have to work with”

13. Realization Acceptance PSC is not going away
Adaptation to a new normal
Illness always lurks in the background
Repeatedly (PTSD?) reinforced
Labs and other tests
Doctor visits

14. Individual Psycho-Social Factors
Isolation
Invisible Illness
Too visible illness
Hypervigilance
Who to tell/not tell
Designated patient
Reactions of others
Communication
trust
Mindfulness Based Stress Reduction (MBSR)
Group Support
Physician Support

15. Isolation Bio-Social (disease-related)
Many persons have never met anybody else with any AILD
Feel alone with a rare disease
Often don’t discuss with some family, friends
People who are not ill just can’t understand
Value of Support Groups

16. Isolation Social “Don’t go out much any more” alcohol: clubs and bars
Concerns re: intimacy
Fear of travel

17. Invisible Illness Early and mid stages Don’t appear sick to others
Others cannot understand
Limitations
c/o fatigue, other symptoms
Unable to participate socially
Perhaps not able to work full-time
Might feel guilty
Not pulling your weight
Work
Family

18. Later stages when signs might be visible
Illness Too Visible
Later stages when signs might be visible
Self-conscious
Edema
Jaundice
Ascites

19. “Hyper Vigilance” Attribute any symptoms to liver disease
Especially abdominal symptoms
Overly “tuned in”
Always on the “look out”
Common response to chronic illness

20. Whom to/not to Tell Family Business associates Casual friends
(Others) fear communicable illness
Perhaps especially autoimmune hepatitis
Despite informing that AILD is not communicable

21. Reactions of Others to the Illness
Often don’t know what to say
“How are you?”
Friendly greeting or
Sincere inquiry
To partner (in whispers) “How’s he/she doing?”
Highly individual
Immediate family
Other family
Friends
Other people can’t really appreciate what it’s like
Some automatically attribute liver disease to alcoholism

22. Designated Patient Too much might seem to revolves around the illness
Socializing
Food
Conversation
Might forget we are still more than our liver disease

23. Relationship with Physician
Very important and (too) often not discussed
Partnership
Long-term relationship
Somewhat unbalanced by it very nature
Should be mutually rewarding
Both patient and physician should benefit
MD: not just a job
It is a privileged profession
Patient: not just there for technical advice
Putting a great deal in the hands of the doctor

24. A Few Suggestions for Mitigating Some of these Issues
Awareness…
Of self
Of others
Acceptance
No miracle cures
“It’s what I have to work with”
Mindfulness…
Learning to stay in the present
Not dwell on what might be
With Reflection
With Therapy
Mindfulness based stress reduction

25. A Few Suggestions for Mitigating Some of these Issues
Gratitude…
Availability of good health care
Family and friends
Communication…
With family and friends
With concerned others
Most people care
With physician
The truth sets us free
Join a Support Group…
Have some fun whenever possible
Express Thanks
Talk about what really matters

26. Thank you