Hi everyone! I’m Emma, a CREST.BD trainee and PhD Candidate. I’ve been collaborating with CREST.BD for almost 4 years now. Much of this time has been spent helping with understanding peoples’ experiences of the Bipolar Wellness Centre (our online portal sharing evidence-based strategies for living well with bipolar disorder) – I interviewed people who had used the Bipolar Wellness Centre about what it was like to participate, what changes they might have made to their self-management routines, and what impact this had on their quality of life.
Recently, a paper based on those interviews was published in the Journal of Affective Disorders. It focused on what it was like for users of the Bipolar Wellness Centre to hear about, and possibly try, self-management strategies for bipolar disorder. By self-management, we mean the skills or strategies people use to cope with a chronic illness. This can include managing symptoms, but it is also important to look at things that help people improve their quality of life (aspects of life that are important to all people, like relationships and leisure, but also things that might be particularly important to people with bipolar disorder like identity and spirituality). The CREST.BD Bipolar Wellness Centre is designed with this broad definition of self-management in mind.
So why is it important to ask people what it’s like to be involved in a self-management intervention? Well, self-management might have both positive and negative impacts. Think of anything you do to look after your health on a daily basis – while it might be good for your health, chances are there are some days when it really frustrating and burdensome to do. It can also impact your life in unexpected ways – for example, my dietician has told me to cut out certain food groups, and that is making spending time with friends really hard because I can’t eat out! So, it’s really important to hear from people with bipolar disorder themselves about what self-management might involve, in order for healthcare providers, peers and support persons to understand what they might be experiencing and better offer help and encouragement along the way. This knowledge also gives us the opportunity to refine the website itself.
In reviewing the interviews with people who had used the Bipolar Wellness Centre, I identified four important experiences.
One of the most common experiences people reported was finding self-management empowering. The possibility of taking control of the symptoms of bipolar disorder and making positive changes to quality of life was truly powerful and hope-inspiring. In particular, it helped people get a sense of independence – they were ‘taking back the reins’ from doctors and medication by playing an active role in self-management.
Secondly, many people described taking ownership of self-managing their bipolar disorder after participating. While doctors might be responsible for medication, participants felt the strategies described in the Bipolar Wellness Centre were their responsibility. This was often associated with that feeling of empowerment – a sense that “now I know that I can do something, I feel like I should do something”.
However, it’s important to note that not all people who used the website felt empowered by it. For some people, the strategies described didn’t seem like enough to control the symptoms of bipolar disorder. Understandably, hearing something like “be kind to yourself” when looking for practical ways to prevent depression or mania might be disappointing, or seem overly simplistic. This is really important feedback – it reminds us clinicians to check in with where people are at in terms of their recovery journey, and tailor the self-management support we offer to what people find most important at that moment in time.
Unfortunately, I heard from a lot of people that self-management, particularly strategies that might be helpful for other important areas of life like relationships, identity and self-esteem, wasn’t something that got enough – if any – attention in clinical settings. Not knowing where to get help with self-management or feeling like their treatment team was only interested in medication management left some people feeling understandably frustrated. On a positive note, a few people had really supportive relationships with their healthcare providers who talked about self-management, and they felt like a member of a team that was working together to deal with bipolar disorder.
What impacts do we hope this study will have?
Firstly, we hope that this publication will help clinicians and support persons understand how important self-management can be in bipolar disorder. In particular, our study shows that self-management that addresses a person’s quality of life (not just symptoms) is particularly empowering and hopeful. These experiences are important for recovery, so self-management should be supported wherever possible.
Secondly, we hope to draw attention to the fact that self-management (despite being an evidence-supported method of staying well with bipolar disorder) isn’t commonly spoken about in clinical practice. We hope that this study will remind healthcare workers of the positive impacts a conversation about self-management can have, and also draw their attention to other strategies that might help improve quality of life.
Finally, the experiences people had with the Bipolar Wellness Centre emphasize how important it is to have a hopeful tone – people can and do live well with bipolar disorder, and making this message front and centre of any intervention is critical. Drawing attention to how one can live well with bipolar disorder has always been one of CREST.BD’s aims, and this study reinforces how important this hopeful perspective is.
Thank you to everyone who shared their experiences with me during this research project. I have been very humbled by being granted the responsibility of communicating people’s experiences, and it is not one I take lightly. In my previous Bipolar Blog I spoke about conducting these interviews and the impact it had for me personally (as a researcher, a clinician, and in recognition of a shared human experience). I want to again emphasize that I am very grateful to have been invited to share in your stories. Thank you.