Researching and living with bipolar disorder: Crafting reciprocal relationships

13 June 2017

In conversations about knowledge translation we often hear people talk about peer- or co-researchers. Now we hear from Natasha Kolida, a graduate student at University of British Columbia who both researches and lives with bipolar disorder.

Natasha was one of 10 speakers who shared their innovative approaches to community-engaged research and knowledge translation as part of Health xChange. The sold-out event arranged in partnership with the BC SUPPORT Unit, saw Vancouver’s thriving and passionate knowledge translation community come together to share ideas on how to conduct innovative community-engaged research.

For more KT conversations visit KT Encounters.

Researching and living with bipolar disorder: Crafting reciprocal relationships

My interest in researching bipolar disorder began when I was diagnosed with it. As a service user in the healthcare system, I quickly realized how little evidence-based information was available to people in my position. At the time of my diagnosis I was an undergraduate student majoring in psychology, so I did what undergraduates often don’t do: I began reading scholarly articles in their entirety. Fortunately, the sometimes-terrifying statistics in the methods sections didn’t stop me from persisting through my mental illness crises. Equally important, it allowed me to progress to where I am now – completing a Master’s degree in educational psychology, where I focus on knowledge creation and translation in mental health/illness education.

On researching and living with bipolar

I occupy a strange place of being a researcher with lived experience. I have helped run a few studies where the participants live with bipolar, but sometimes they haven’t known I do as well. Among the many ideas I’ve learned from these encounters, one of the most notable findings is the tone of the conversation when I disclose my diagnosis versus when I don’t. When I do disclose, the dialogue feels as if I’m talking to an acquaintance or a friend. When I don’t disclose, it makes me reflect on my role as a researcher and the distance I feel between me and the other person. In these cases, I feel uneasy and I think to myself: “Is this how I sound to researchers?”. We often talk about the importance of communication and language in mental illness, and these experiences opened my eyes to a new researcher-participant barrier.

The disconnect between researchers and people with mental illness experience

Recently I was at a conference giving a presentation about being a “researcher-patient”. A comment I received at the end was rather poignant; my positionality and expertise could be used to create a guide to help facilitate better communication between researchers and people with mental illnesses. Some researchers struggle with finding the right words to say to someone with lived experience and sometimes even feel like the “bad cop”. Likewise, I have heard the struggles of people with mental illnesses trying to tell researchers about their experiences and sometimes feeling misunderstood or under the microscope. Still, the wonderful part about this is that both sides want to work together (and often do) to bridge this gap. In psychosocial research, it’s easy to use a community-based research approach that brings everyone into the research process as equal stakeholders with unique insights. But the question remains: What practical steps can we take to achieve this?

Building a bridge and meeting halfway

My first thought about bipolar disorder research, way back when, was how little I saw my own experiences in the research. I was always looking for my story, for something to relate to – but I rarely found such articles. Even in common diagnostic scales and clinical tools I struggle to see myself and my lived experiences. This is especially noticeable in traditional biomedical or pharmacological research, but it doesn’t have to be this way. Even in the most clinical studies, relationship-building is a key that unlocks the doors to authentic data. Taking the time to connect with a participant is profound. It shows that you’re both human beings who both want to help each other in a meaningful way. From the participant’s side, I can say this makes a world of difference in feeling like my experiences are valued and my “data” will be treated respectfully. And as a researcher, I get the privilege of taking someone’s most personal experiences and using them to help other people who have those experiences. This is the most fruitful kind of research – reciprocal.

Recommendations for engaging in reciprocal research

I’m eager to begin working on – formally – an educational resource to better connect researchers and participants using situation-specific communication and relationship skills. Until then, I have several recommendations:

  • Look toward an action research approach. Several organizations, like CREST.BD (Collaborative RESearch Team to study psychosocial issues in bipolar), are already doing this and have written about the process.
  • Self-development – and this goes for everyone – is crucial. We can all improve our capacities for empathic thoughts and behaviours.
  • Research is not just research, but also a relationship. Relationships involve trust, perspective-taking, active listening, and other skills we use with our acquaintances and loved ones. All relationships have boundaries that need to be negotiated and respected, and research isn’t exempt from this process.

There is no reason not to engage in sincere interactions with research participants. Likewise, as a participant I know that when a researcher – lived experience or not – extends this invitation, I am significantly more receptive to the research process. We should not take anyone, or anything, for granted. Knowledge translation plays a key role in the grand scheme of this research from both sides. We cannot assume what the participant does and does not know. We cannot assume what the researcher does and does not know. But we can close the language gap by building genuine relationships with one another. We must approach these relationships with curiosity and be pleasantly surprised by engaging in reciprocal research. Take it from me – someone who’s been on both sides and has been pleasantly surprised every time.

Natasha Kolida
Graduate student in the Faculty of Education, University of British Columbia

Natasha is a graduate student at the University of British Columbia where she studies human development, learning, and culture. She is a peer researcher with the CREST.BD network and has her own organization called Redefining Bipolar. Additionally, Natasha works as a peer support facilitator for mental health groups in Vancouver.