Living with Acromegaly
Marcia Sasano
Study the influence of psychological and behavioral factor on illness course
Evaluate prevention and intervention programs
Practical Application of theory
Therapeutic intervention
Advocacy
Role of a Health Psychologist
Giant’s Heart
Giant’s Heart
Giant’s Heart
"Ogres are like onions""They stink?""Yes. No.""Oh, they make you cry.""No.""Oh, you leave’em out in the sun, they get all brown, start sproutin' little white hairs.""NO. Layers. Onions have layers. Ogres have layers. Onions have layers. You get it? We both have layers.""Oh, you both have layers. Oh. You know, not everybody likes onions. What about cake? Everybody loves cake!"
- Shrek and Donkey in Shrek
Acromegaly
Acromegaly is a hormonal disorder that results when the pituitary gland produces excess growth hormone (GH). Researches estimate that about 3 out of every 1 million people develop acromegaly each year.
Initial Impact◦ Shock◦ Denial◦ Loss and grief◦ Anxiety and depression
20-25% experience psychological symptoms
If these reactions last too long, they can have an negative effect on the illness
Must adjust to:◦ Symptoms of the disease◦ Stress of Treatment◦ Feelings of vulnerability◦ Loss of Control◦ Threat to self-esteem◦ Financial Concerns◦ Changes in family structure
Impact on the individual
Reactions to Diagnosis Denial
◦ Defense mechanism by which people avoid implication of illness◦ Double edge sword
Fear &Anxiety◦ Fear of treatment, death, loss of partner◦ Uncertainties contributes to anxiety
Depression ◦ Loss is central to most expression of depression◦ Factors associated with depression include lack of social support and
stress
Anger◦ Why me?◦ Directed at health care providers, partners, family, friends, and the illness
itself
Must adjust to:◦ Increased stress◦ Change in the nature of the relationship◦ Change in family structure/roles◦ Lost income all have impact
Different issues for different relationships◦ Adult children of ill parents◦ Spouse of ill person
The Impact On Family
Illness is a crisis because it is a turning point in an individual’s life
Disrupts to established patterns of personal and social functioning produces a state of psychological, social, and physical disequilibrium
Adaptation = finding new ways of coping with drastically altered circumstances. Restore equilibrium.
The Crisis
Coping process (3 stages) is influenced by 3 factors◦ Illness-Related Factors◦ Background and personal Factors◦ Physical and Social Environment Factors
Coping process influences outcome
The Crisis
Illness-Related Factors◦ Degree of illness acceptance◦ Degree of lifestyle/functional impairment
Background and Personal Factors◦ Demographic - Age, Gender, SES◦ Personality - Negative affectivity vs. Hardiness
Physical and Social Environment Factors◦ Social support – Instrumental & Emotional
In the long run emotional is better
Important Factors
Some of the complications can be medically managed – pain, cardiovascular problems, sleep disturbances, weight gain, diabetes, etc.
Treatment can be stressful due to complexity of endocrine system
Psychosocial adjustment difficulties are oftentimes neglected
In and Outs of Acromegaly
Adjust to symptoms Threatened self-image Interruption to life role Loss of independence Learning new techniques for symptom
control Facing stressors of modern medicine Facing complex, conflicting emotions Uncertain future
Illness Related Tasks
Major Depression Anxiety Disorders Adjustment Disorder Stress Brain Executive functioning
◦ Planning◦ Memory◦ Attention◦ Problem solving◦ Reasoning etc
Neuropsychological Complications
What does the Pituitary have to do it?
◦ Endocrine glands – specialised for growth, development, metabolism
Thought Feeling and Behaviour
Response to stress (natural alarm system) Interact with all systems in the body Control growth and development Maintain homeostasis Production, storage and utilization of energy Birth Lactation
Role of the Endocrine System
Stress
Start
Peak
Fail
Loss of Control
Stress What
◦Reaction to stressor
When◦Threatens ability to cope (subjective)
Where◦Body & Mind
How◦Physiological changes
Who◦Children, Adolescents, and Adults
Stress
During stressful situations some physiological adjustment are made via the Autonomic Nervous System to overcome stress
◦ Hormones – Adrenaline, Cortisol, etc
◦ Blood Pressure
◦ Heart Rate
◦ Blood Distribution
◦ Energy Management
◦ Immune System
Pituitary Gland = stress circuit
Stress
Stress Cortisol Mood Difficulties
Origin
Origin
What is the relationship between stress and acromegaly?
◦ Stress changes physiology◦ Stress changes behaviour◦ Moderating factors: e.g., coping, social support,
personality and control
Stress and Illness
Stress takes away the ‘focus’ from growth, reproduction, metabolism and immunity
Stress
Consequences of Stress
Cognitive Symptoms
Memory problems Inability to concentrate Poor judgment Seeing only the negative Anxious or racing thoughts Constant worrying
Physical Symptoms
Aches and painsDiarrhea/constipationNauseaDizzinessChest painRapid heartbeatLoss of sex driveFrequent colds
Consequences of Stress
Emotional symptoms
Moodiness Irritability/short temper AgitationFeeling Overwhelmed Sense of lonelinessDepression General unhappiness
Behavioral Symptoms
Eating more or lessSleeping (too much/little) Isolating from othersProcrastinatingNeglecting responsibilitiesAlcohol, cigarettes, or drugs Nervous habits
Apathy
Numbness/Emotionally unresponsive
Absence of Motivation
Non-participation/social isolation
Relationships
Humor Friends and Family Relax Time Faith Attitude Knowledge/Preparation Problem Solving
Getting Through
“I have to monitor my energy levels, no multi-tasking anymore, or running around. My serenity is my priority to stay alive. My control needs to stay balanced, so less stress in my life is most urgent” ...
“... I know it can be “good excitement” or bad stress. No difference, my body reacts the same ...”
“... If I can’t control my environment, at least I can learn about my inner workings and free myself from my behaviour or thoughts that can bring unnecessary worry ...”
Common Sense Wisdom
Problem Focused◦ Direct action: doing something to cope directly with the
stressor◦ Seeking information: finding what help in available◦ Seeking advice: asking others for advice or help
Emotion Focused◦ Resigned acceptance: the individual comes to terms with
the problem and accepts it◦ Emotional discharge: expressing feelings to others as a
way of release◦ Intrapsychic processes: cognitive redefinition, denial,
avoidance
Coping Styles
Adaptation and Adjustment◦ Physical, vocational, self-concept, social,
emotional, compliance
Quality of Life◦ Degree of quality people appraise their lives to
contain Quality = fulfillment or purpose
◦ Health-related quality of life (physical status and functioning, psychological status, social functioning, disease or treatment-related symptomatology)
Outcome of crisis
Physical Emotional Social Daily functioning Symptoms Cognitive ability Health perception Sexual functioning Vitality Pain Body image
Quality of Life
Be your advocate Sympathise with your cause Deal with sleep deprivation Have appropriate treatment System must be balanced Talking therapy must be considered
What you must know
Increase social support Manage Time Pace 4 Basics Reducing the impact of the stress
Coping
“Maybe it’s hard to believe what’s with my obvious charm and good looks but people used to think that I was a monster.
And for a long time… I believe them.
But after a while, you learn to ignore the names people calling you. You just trust who you are.” – Shrek