Living with Acromegaly

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