For the past year my role as a CREST.BD trainee has been this: I engage with people who participated in any Bipolar Wellness Centre component, which share information about how to improve their quality of life through self-management strategies. These different components included online webinars, videos, and Living Library peer support – as well as offline workshops in Toronto, Kingston, and Ottawa. I interviewed people three weeks after they visited one of these components to ask them about their experiences; this included whether they learned anything new, tried any new strategies, and how they felt about their quality of life and their ability to manage their bipolar disorder.

In total, forty-five people generously gave their time to help with our research, and for that I am incredibly grateful. Spending time talking with others about their experiences has given me a lot to think about: As a researcher trying to wrap my head around qualitative methods; as a provisional psychologist trying to learn about the needs and preferences of people with bipolar disorder; and simply as one human being listening to another human speak about their life.

As a researcher:

Undertaking qualitative research has required a radical shift in thinking from my research background in quantitative methods. In quantitative research, human experience is operationalised as items on a questionnaire, a countable behaviour, or the activity of neurons. We can perform statistical tests to see if our hypotheses were correct – is p less than .05? Great! We have the answer! Qualitative research, in contrast, has us simply ask people to describe their own experiences. I was really excited to see how much richer information can be obtained by allowing people to speak at length about things that might not necessarily be captured by a questionnaire. The challenge, however, was knowing then what to do with that data – I couldn’t distil it down into numbers and get a clear answer – rather, I had to go through each interview line by line and categorise text as speaking about different things, then start to group together the words of several individuals who seemed to share a similar perspective. This required me to learn to be okay with uncertainty – there was no one ‘right way’ to represent the data. That leads to a heavy sense of responsibility in being the person responsible for interpreting, categorising and summarising the words of others. I have done my best to accurately represent the viewpoints of others, but I have also come to understand that qualitative research involves the coming together of two meanings – that of the participant and that of the researcher, and it isn’t always easy to separate the two.

As a psychologist:

Currently, I am on placement at an acute psychiatric inpatient unit in Melbourne, counselling individuals who are too unwell to be at home. I have long been interested in quality of life, and listening to so many stories has given me specific information about areas of life important to people with bipolar disorder, the ways they want to work on quality of life with their doctors, and what is important to them to feel quality of life is improving. I feel I have a better understanding of possible impacts of hospitalisation to a person’s sense of identity and independence, and try to give my clients the space to talk about the sometimes traumatic or confronting experience of being in hospital. Talking in more depth with people about their quality of life has also helped me remember the areas that might be impacted by bipolar disorder beyond what is written in the DSM-V (the diagnostic manual), such as cognition, relationships and spirituality. As well as working on strategies to deal with symptoms, I talk to my clients about their goals and values and ways to make a difference in those areas, even if they aren’t thought of as traditional treatment targets for a particular mental illness. Finally, I make sure that when I talk to doctors I talk about a client’s quality of life, values, and preferences, so we as a team can plan for ways to help them meet their recovery goals.

As a human being:

I was profoundly impacted by my experience conducting these interviews. I heard stories filled with challenges and sadness, but also of immense hope and determination. One thing that particularly struck me was how keen people were to participate in research to help others struggling with bipolar disorder. There was a real sense that things are changing in mental health, and that with research and community participation things could be made better for the next generation. I was also impressed by the creativity I heard – people came up with unique ways to tweak strategies to suit their own lives, like printing out and laminating the QoL.BD so they could mark their progress daily on their fridge! Finally, I saw that for many people self-management and ongoing education for bipolar disorder was a way of life, something that was continuously trialled, refined, and picked up again after a fall. I was humbled by my privilege in being able to take things like sleep and self-care for granted, and reflect on my own lifestyle where I allow such things to fall by the wayside. It made me think about the way society tells us it is normal to push ourselves to our limit, and it takes bravery to carve out a space where you can look after yourself in the face of such pressures.

It was an incredible honour to speak to so many people about their bipolar disorder, their struggles and hopes. There was a strange sense of intimacy hearing the details of people’s lives, a sense of appreciation that people were so open and candid, and a sense of duty to do the right thing by them in turn by making sure their words have real-world impact on mental health practices. I hope that spending some time to talk about how they have impacted my research and clinical work can show just how powerful the sharing of stories can be.

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