The Mood Disorders Association of Ontario recently made its first foray into webinars by hosting two presentations by Erin Michalak, Associate Professor, Department of Psychiatry, University of British Columbia about research being done by the Collaborative Research Team to study psychosocial issues in Bipolar Disorder. (CREST.BD) is a national research network dedicated to changing the landscape of bipolar disorder research and care.
Erin's presentation offered an overview of bipolar disorder, an introduction to CREST.BD and an overview of a program of collaborative research focused on bipolar disorder. Erin shared a classic introduction to the spectrum of bipolar, which is characterized by challenges with peaks and troughs in mood. She noted that about 8% of the population fall on the spectrum, with the most common symptoms being episodes of depression.
Erin also explained the meaning of the phrases “knowledge exchange” or “knowledge translation” within the context of health research and highlighted CREST.BD’s unique approach to research, which emphasises knowledge exchange, mixed methods – both qualitative and quantitative, and community based participatory research that focuses on the broad involvement of stakeholders including interdisciplinary researchers, people living with bipolar disorder, healthcare providers, and technology experts, with a focus on recovery, psychopathology, and psychosocial treatment.
CREST.BD research, is accessible in multi-media formats on line, indicate that “the management of bipolar disorder is traditionally measured by looking at a person’s levels of symptoms, or how often they fall back (relapse) into episodes of depression or mania.” But these measurements don’t necessarily take into account an individual’s culture, value systems, goals, expectations, standards and concerns.
Erin and her team have interviewed scores of people with bipolar disorder about their quality of life, and discovered that “individuals take far more into account than just the symptoms of their condition.” In fact they’re “factoring in a host of things that are not commonly measured in bipolar disorders research and care (e.g., sense of self and identity, coping with stigma, spiritual life, independence).”
Their research is showing that bipolar disorder “may affect quality of life in specific ways compared to other kinds of mental health conditions” – and that a “condition-specific measure of quality of life could be useful for both people living with bipolar disorder and their healthcare providers in terms of assessing treatment and recovery goals.”
One of the most compelling parts of Erin’s presentation was her sharing of a powerful statement from Sara Lapsley, a CREST.BD researcher who lives with bipolar disorder herself, who has said:
"I think it can be difficult for people to fully understand what it is like to experience dizzying swings from elation to crushing depression inherent in BD. Grandiosity and psychosis are akin to possession by an alien force; briefly exhilarating, then terrifying, exhausting and confusing. The aftermath – when you wake up with your whole life in shambles – is possibly the worst of all. Day to day we live with the challenges of grinding self-doubt, irritability, insomnia, anxiety, agitation, self-stigma, social isolation and disability. BD can be the cause of tremendous suffering. Yet there are those of us who live well. Its presence can confer a richness of experience and a desire to soar that many of us parlay into lives of creative and humanistic contribution.
I think the thing that provides most hope is that bipolar can be associated with great strength. It’s common with people high creative outlook. Many people live well with bipolar but those are not the stories we hear about. Mostly we hear about the struggles, being symptomatic, misrepresentation in society, societal stigma clouds understanding of bipolar.”
If you’re interested in finding out more about CREST.BD, their research, and perspectives on what ‘recovery’ and 'quality of life' mean you can find a selection of videos and slideshows on their YouTube channel or learn more at their Facebook page.