Living with Acromegaly

1. Living with Acromegaly Marcia Sasano

2. Role of a Health Psychologist • Study the influence of psychological and behavioral factor on illness course • Evaluate prevention and intervention programs • Practical Application of theory • Therapeutic intervention • Advocacy

3. Giant’s Heart

4. Giant’s Heart

5. 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

6. 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.

7. Impact on the individual • 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

8. 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

9. The Impact On Family • 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

10. The Crisis • 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.

11. 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

12. Important Factors • 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

13. In and Outs of Acromegaly • 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

14. Illness Related Tasks • 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

15. Neuropsychological Complications • Major Depression • Anxiety Disorders • Adjustment Disorder • Stress • Brain Executive functioning • Planning • Memory • Attention • Problem solving • Reasoning etc

16. Thought Feeling and Behaviour • What does the Pituitary have to do it? • Endocrine glands – specialised for growth, development, metabolism

17. Role of the Endocrine System • 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

18. Stress Peak Loss of Control Fail Start

19. Stress • What • Reaction to stressor • When • Threatens ability to cope (subjective) • Where • Body & Mind • How • Physiological changes • Who • Children, Adolescents, and Adults

20. 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

21. Stress • Pituitary Gland = stress circuit Stress Cortisol Mood Difficulties

22. Origin

23. Origin

24. Stress and Illness • What is the relationship between stress and acromegaly? • Stress changes physiology • Stress changes behaviour • Moderating factors: e.g., coping, social support, personality and control

25. Stress • Stress takes away the ‘focus’ from growth, reproduction, metabolism and immunity

26. 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

27. 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

28. Apathy Numbness/Emotionally unresponsive Absence of Motivation Non-participation/social isolation Relationships

29. Getting Through • Humor • Friends and Family • Relax Time • Faith • Attitude • Knowledge/Preparation • Problem Solving

30. Common Sense Wisdom “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 ...”

31. Coping Styles • 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

32. Outcome of crisis • 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)

33. Quality of Life • Physical • Emotional • Social • Daily functioning • Symptoms • Cognitive ability • Health perception • Sexual functioning • Vitality • Pain • Body image

34. What you must know • Be your advocate • Sympathise with your cause • Deal with sleep deprivation • Have appropriate treatment • System must be balanced • Talking therapy must be considered

35. Coping • Increase social support • Manage Time • Pace • 4 Basics • Reducing the impact of the stress

36. “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