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

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

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

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

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

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

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)

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

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

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

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”

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

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

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

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

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

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

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

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

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

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

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

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

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

Thank you