Recovery and Empowerment in Bipolar Disorder

1. Recovery and Empowerment in Bipolar Disorder Alfredo Zotti alfredo.zotti@bigpond.com Adopted and modified, with permission, from partnership for consumer empowerment of Canada by Alfredo Zotti

2. This presentation is all about how and why I have learned to cope and function well with my mental disorder beginning with social and environmental issues and moving to the personal.

3. What Matters • What matters towards recovery is not how severe our mental disorder is but how we travel inside: towards recovery and hope; or towards hopelessness and despair. • In my experience, the majority of sufferers in the world today travel towards hopelessness, because they have been convinced that there is no hope for their condition

4. A New Paradigm Shift in Power Relations • Prognosis of Doom is to be replaced with the Reality of Hope: the message is that Well-being is Achievable! • Persons with psychiatric disorders are no longer passive recipients of behaviour & symptoms management oriented services. • Choice, self determination, and personal responsibility are key elements of recovery. • Expertise of consumers is recognised and valued.

5. Stigma and Myths • Dangerous • Irresponsible • Dependent • Incompetent

6. The person andthephysical and social environment: healthy integration History Family Values & Beliefs Friends PERSON Work Hopes & Dreams Education Spirituality Sexuality Politics

7. Unhealthy integration of the person and the environment Family History Work Politics Friends Values Mental Illness Education Spirituality

8. Negative Impact of ideological mental illness on the person 1 • * Self-concept • Self-efficacy • Hopes and Dreams • Emotional Impact • Major Social Roles • Engagement with “helping systems”

9. Negative Impact of ideological mental illness on the person 2 • Loss of Sense of Self • Loss of Connectedness • Guilt • Shame • Isolation • Loss of Power • Loss of Valued Role • Loss of Hope • Spaniol et al., 1999

10. Negative Impact of ideological mental illness on the person 3 • People are trying to cope with: • The catastrophe of mental illness and multiple and recurring traumas. • Trauma from the illness and trauma from how we are treated. • Negative professional attitudes. • Lack of appropriate assisting skills of professionals.

11. New Paradigm • “The social power to define and categorize another person’s experience is not a power to be ignored. … in order to support persons who are trying to recover, we must attend to the fullness of their experiences, and not be distracted by their medical diagnoses.” • McGruder 2001

12. What helps and what hinders • “The science of psychiatric diagnosis and treatment is neither objective, nor neutral nor value free. Rather, it is a social process open to bias and influenced by the larger social, political, and cultural milieu.” • McGruder 2001 • Relevant book and article • The Hermeneutics of Medicine and the Phenomenology of Health • http://books.google.com.au/books?id=9DFKn3xNAY8C&dq=shamanic+practices+in+Taiwan+mixed+with+western+psychology&source=gbs_navlinks_s • Mental health, culture, race and ethnicity http://www.ncbi.nlm.nih.gov/books/NBK44249/

13. Empowerment • Empowerment is an issue of social justice and refers to the process that people go through to gain or regain the power and control over their own lives that is necessary for dignity and self-determination. It requires that people have access to the meansand opportunityto assume responsibility for their own lives and well-being.

14. The Right Attitude Towards Recovery • The person most likely to get well – to become empowered – is the person who feels free to question, to accept or reject treatment, and to communicate with and care for people who are caring for him… Ultimately, patient empowerment is a matter of self-determination; it occurs when a patient freely chooses his or her own path to recovery and well-being. It is the job of mental health services to provide an environment of personal respect, material support, and social justice that encourages the individual person in this process. Clay(1990) • http://alfredo123.wordpress.com/2013/09/16/1573/

15. The Belief That One Cannot Recover • “the obstacles to recovery are enormous, but the greatest obstacle is simply that people think one cannot recover!”

16. Can people with bipolar learn to control moods and symptoms? • Yes. I have done it, my wife has done it, and so have many hundreds of cyber friends whom I help most days as a volunteer online helper for sufferers.

17. How to control symptoms and the importance of therapy • Many factors are important for controlling one’s symptoms but not one, in itself, is sufficient. We need a variety of methods that combined can help us. In my personal opinion, therapy is always necessary because it is important for a sufferer to discuss difficulties that rise due to the mental disorders no matter if the disorder is biological or due to PTSD.

18. What helps? • Medication can help; a support group is helpful; an ideal environment is important; access to education, work and leisure is important; creative activities are important; avoidance of recreational drugs, such as alcohol or marijuana, or other recreational drugs, is extremely important; good nutrition and adequate sleep are all important.

19. What has made it possible for me to learn to cope well with my bipolar disorder • I have been able to develop full resilience and self awareness about 2 years ago at age 53 for a variety of reason that I will divide into factors:

20. Relevant Factor 1 - critical consciousness • I have always been a little self critical, in a constructive way, and I feel that this is linked to my creativity and the fact that I am an artist. Positive self criticism is vital in the recovery process. Paolo Freirehttp://www-rohan.sdsu.edu/~rgibson/freirall.htm • I have always been a little self critical, in a constructive way, and I feel that this is linked to my creativity and the fact that I am an artist. Positive self criticism is vital in the recovery process. Paolo Freirehttp://www-rohan.sdsu.edu/~rgibson/freirall.htm Expressive writing http://homepage.psy.utexas.edu/HomePage/Faculty/Pennebaker/Reprints/Pennebaker&Chung_FriedmanChapter.pdf

21. Relevant Factor 2 - identifying the origins of one’s main trauma • I have been able to identify my trauma, or what triggered my Bipolar Disorder, and resolve it. • Childhood Trauma see ACE study http://www.cdc.gov/violenceprevention/acestudy/

22. Relevant Factor 3 • I have been fortunate to meet many psychologists and psychiatrists that today are friends. This has given me a chance to really learn about the mind and therapy and to become a kind of self therapist.

23. Relevant Factor 4 • I have an extensive support group today made up of academics, mental health professionals, online friends from all over the world, my wife, my therapists and my close friends. These people not only support me but also provide much needed feedback so that I can become fully aware of my perceptions and distorted thinking.

24. Relevant Factor 5 • I don’t drink alcohol and I don’t use recreational drugs.

25. Relevant Factor 6 • I eat highly nutritious food and sleep well.

26. Relevant Factor 7 - literature and education • I read a lot and I study about 3 hours each day. Education and knowledge is essential to stay well.

27. Relevant Factor 8 - the importance of emotions • I always let emotions and feelings out. I make sure that I cry occasionally and I let myself become emotional but in a controlled manner.

28. Relevant Factor 9 • I make sure to have enough time to compose music, create visual artworks, write poems and complete some creative writings. • The creative process is my greatest therapy. DABROWSKI http://homepage.psy.utexas.edu/HomePage/Faculty/Pennebaker/Reprints/Pennebaker&Chung_FriedmanChapter.pdf

29. Factor number 10 - acceptance of one’s disorder • Perhaps the most important factor is that I have come to accept my Bipolar 2 Disorder as part of me. I do not become anxious when symptoms rise and moods change. I remain in control and try to use these to my advantage. If I was to panic, as I did in the past, I would not be able to cope and I certainly would not be on the road to recovery. Acceptance is perhaps the most important factor of all.

30. What sort of person am I today? • Because of the above mentioned factors, I am able to function very well today. It has taken me a lot of work, tremendous effort, and none of this would have been possible had I not resolved my past trauma. In my case, and also in my wife’s case, medication alone therapy would not have been helpful for us in terms of achieving the kind of recovery that we have achieved.

31. Today I only take medication (about three months per year) when I feel absolutely high. When I become excessively high (hypo-mania), usually before Spring, I start doing a million things: I am a musician so that I will play many instruments and then go off to other activities such as painting, drawing, writing poems and academic writing and also do many other things. My wife is the first to notice that I am high so when this happens I take Epilim, which is Sodium Valproate which is an anticonvulsant. I only take a very small dose but enough to help me control my more severe moods.

32. Anti Depressants and Anti Psychotics • Antidepressants are not usually indicated for Bipolar, unless there is persistent and dominant depression. But, generally speaking, Antidepressants tend to precipitate manic attacks so that they are not really indicated for people with Bipolar Disorder. Anti psychotics can have severe side effects so that, while they are at times necessary, it is important to be careful and try everything possible to take the least dose possible that will help.

33. How efficient is medication? • “…Despite major research efforts on understanding the biological and genetic basis of Bipolar Disorder (and other mental disorders) and over 5 decades of intensive development of new drugs for these conditions, psychopharmacology has not yet provided a full solution to severe mental disorders.” (Wright et al. 2006)

34. Medication continued • For example, the degree of improvement in positive symptoms of schizophrenia with anti psychotic medication is typically less than 20% (Khan et al. 2001) • The relapse rate for Bipolar Disorder is in the range of 30% to 40%(Geddes et al. 2004; Ginsberg 2006).

35. Medication continued • Remission rates for treatment of Major Depression with the use of antidepressants range from 27% to 13% (Rush et al. 2007). • It is clear that medication alone is not a suitable long term treatment. • In certain cases, while medication can save lives in the initial stages of the treatment, it can also become an agent of trauma (Whitfield, 2010).

36. The Biopsychosocial Approach • It is clear that the Biopsychosocial approach is the one that will give us the best results. But are we really using it? • No matter if the mental disorder is biological of traumatic in nature, therapy is an important part of the treatment. • I see a problem online, when I try to help people: they often tell me that therapy does not work for them and yet, the way in which I help them, supported by psychologists and psychiatrists, is a kind of therapy so that what they are saying is a contradiction. They often suffer with distorted thinking and I try to help them with this problem.

37. What causes distorted thinking? * Emotions and moods can affect cognition in such a way that the sufferer perceives distortions of reality. This distorted thinking becomes mixed with anxiety and even panic attacks and is influenced by past traumatic experiences, by ongoing trauma, by Stigma and Prejudice. Emotional thinking is not a sign of lack of intelligence.

38. How do I cope with distorted thinking? Feedback. • I rely on my support group and I never believe the perception. If I can get feedback from my support group immediately then I do so, but if not I put my perception and related emotions on hold and move on with my life until I can get feedback, usually within one or two days. This is extremely difficult to do but necessary for me.

39. The importance of being aware of distorted perceptions • Cognitive behavioural therapy (CBT) does not always work, especially in cases of PTSD. That is why we need a support group that can offer feedback because distorted thinking operates in combination with emotions, feelings and past traumas and because of this it is not as simple as attempting to think differently. The kind of emotions here involved operate at the subconscious level and often bypass cognition. • Mick Cooper http://www.booktopia.com.au/essential-research-findings-in-counselling-and-psychotherapy-mick-cooper/prod9781847870438.html?source=pla&gclid=Cj0KEQjwyrqgBRDepamt-LWA2oABEiQAV7nwwDtv5ynXdsfrM4XMjjSqAi5bGDUavQ0-Y1hoWQr-H8kaAi348P8HAQ

40. What sufferers say about CBT • A psychologist from the USA writes: • “Alfredo, I really do not believe that CBT would help me because the problems are much deeper than just learned, thoughtless behavior.  Trauma changes everything and I sometimes feel like the effects are in my bones.  However, that has improved a lot with therapy.  Working with EMDR has given me a lot of hope and I couldn’t have gotten as far as I have without the help of my therapist, who is very skilled in this treatment method. I think CBT would be fine if you’re just dealing with simple incorrect ways of thinking and there’s no underlying trauma.  Just my opinion, of course, but one based on personal experience and learning from various literature on the subject.”

41. What sufferers say about CBT • A Social Worker, from Ireland, writes: • “I think that CBT is in effect, a bit of an insult to people like us who have a  good knowledge and insight into our own condition. CBT is very 'quick cure -all' and has been heralded as a great help to people who suffer from Social phobia/Depression/Anxiety. To me it is nothing short of Pop psychology why ? • Well  CBT is basically about changing the script, the message that we got as kids, that we are no good, hopeless etc., and we are to change our thinking, but it completely fails to address the human spirit. It fails to address the fact that many people who are labelled with Borderline and indeed with Bipolar 1 and 2, are in fact suffering from PTSD and there are, as you know, varying degrees of PTSD.”

42. What sufferers say about CBT • A therapist from the USA writes: • “Our whole lives we have been raised without any attention to distorted thinking or perception.  How is it then are we ever going to see what is true, identify thoughts which have been used many times and accepted as true, with only minimal effort and 1 appt/week?  For CBT to work one must immerse themselves in it daily.  Now does that sound easy?  Myself, it does not work or does not really work well.  I can stop and identify thought distortions but they are automatic and sometimes running in the background unnoticed.

43. What sufferers say about CBT • I know what thoughts, what chain of distorted "reasoning" results in me feeling a certain way, having a certain perspective and perceiving the world around me past and present.  I see that they are distorted and can identify some of the sources of the distortion.  Knowing all this does not change easily what I have engaged in for many years.

44. What sufferers say about CBT • “Rest easy, there are very few in this world that see with clarity, many of which have spent a lifetime in this pursuit.”

45. Types of Psychotherapy Approaches Four Major Categories: • Psychodynamic Psychotherapy • Humanistic Existential Psychology • Cognitive Behavioural Therapy • Transpersonal Psychotherapy

46. Other types of therapy • EMDR Eye movement desensitization and reprocessing (EMDR) is a fairly new, nontraditional type of psychotherapy. It's growing in popularity, particularly for treating post-traumatic stress disorder (PTSD). PTSD often occurs after experiences such as military combat, physical assault, rape, or car accidents.

47. Other Types of Therapy Continued • Narrative therapy • Narrative therapy seeks to be a respectful, non-blaming approach to counselling and community work, which centers people as the experts in their own lives. • It views problems as separate from people and assumes people have many skills, competencies, beliefs, values, commitments and abilities that will assist them to change their relationship with problems in their lives.

48. Narrative Therapy Continued • Curiosity and a willingness to ask questions to which we genuinely don’t know the answers are important principles of this work. • There are many possible directions that any conversation can take (there is no single correct direction). • The person consulting the therapist plays a significant part in determining the directions that are taken. From the Book What is narrative therapy? By Alice Morgan

49. Writing Therapy • Writing therapy is a form of expressive therapy that uses the act of writing and processing the written word as therapy. Writing therapy posits that writing one's feelings gradually eases feelings of emotional trauma. It can be administered in person with a therapist or remotely through mailing or the Internet. • Woolston, Chris (2000-03-16). "Writing for therapy helps erase effects of trauma". CNN.

50. Creative therapy • Creative arts therapies are based on the premise that when someone works creatively under the guidance of a qualified therapist, they become more expressive and communicative. This raises their awareness of issues and brings impetus for change.  The creative work can involve music, art, dance, movement, and other creative activities.