So at some point this week I’ll get around to describing my full journey in Washington, DC, at the International Society for Bipolar Disorders conference. You can look to my social media outputs for glimpses at that. But I did want to share my presentation that I did in its entirety. It’s almost verbatim because that’s how I practice for presentations. So here you go:
My name is Natasha and I’m a graduate student at the University of British Columbia in Vancouver, Canada. I’m here today to tell you a story about blogs, and how having bipolar disorder and being a researcher helped me fight stigma in new ways.
As per conference guidelines, I have no conflicts of interest to report.
Today we’re going to ask ourselves, how can blogs simultaneously destigmatize and inform research, care, and policy? Let me first describe to you what it means to be a researcher-patient.
So the dual-role model is not a new term and it’s used in different contexts. Today I’m using it in the context of both having bipolar and studying it.
We’re all here because we know what bipolar disorder is in some way or another. But obviously bipolar is much more than that. From a lived experience perspective, my bipolar is the lens I see through, the struggle I carry every day, the gift I cherish, and the life I live. It doesn’t define who I am, and yet it is still a huge part of who I am and why I’m here today.
But I’m also a graduate student. I study human development, learning, and culture and I focus primarily on education. So I see through that lens as well.
There’s three important aspects to consider when being a researcher-patient:
1)The first is having bipolar means having that patient perspective that has extraordinary insights but also comes with a lot of stigma
2)The second is being a researcher means holding behind the scenes knowledge that people with bipolar do not have or may not have access to
3)And combining these two perspectives means having a new currency with which to conduct research and inform practice and policies.
So let’s turn to blogs with this in mind.
I present to you two examples — two blogs. The first blog is my personal blog that I started a few years ago because of the lack of patient education I received when I was diagnosed with bipolar. Like many others in my position, I was given a diagnosis, medication, and minimal to no information on anything else. That patient education is crucial to recovery and maintaining wellbeing, and through blogging I was able to help myself and others gain access to that imperative information.
The second blog is called the Bipolar Blog and is part of the CREST.BD network, which stands for the Collaborative Research Team that studies psychosocial issues in bipolar disorder. I was approached by the network lead to curate this blog in a way that combines the perspectives of researchers, healthcare providers, people with lived experience and their supporters in a way that levels the playing field of expertise. The Bipolar Blog is a knowledge translation product that aims to educate and provide resources to the many different kinds of experts who write for and who read the blog.
These are small screenshots of the blogs. On the left is my personal blog, and the right is the Bipolar Blog.
The Bipolar Blog first gave me the insight that negotiating with all these different kinds of expertise is a more fruitful experience because of being a researcher-patient. I’ve spent the last three years interacting with people online in ways that challenge stereotypes while at the same time bringing evidence-based discussions to various online communities.
On my blog, I have translated and mobilized knowledge about various psychosocial theories and their intersectionality with the study of bipolar disorder. An example of this is one of my most popular posts about Lev Vygotsky’s concepts of word meaning and verbal sense. By understanding these concepts, I have simplified these developmental terms and used them to explain one aspect of identity and bipolar that I have struggled with and many others have as well. Using both lenses in this case brought fruitful conversation online and in my home community. I received many messages of people who finally read something that explained a feeling they couldn’t explain for themselves.
Likewise on the Bipolar Blog I help writers tell their stories – be they personal or research – by emphasizing the knowledge translation process. The goal is to craft information with as many people as possible in order to help everyone affected by bipolar disorder. Because CREST.BD has created such rich resources like the Bipolar Wellness Centre and the Quality of Life tool, it’s imperative that people like me can easily find that information. And those tools, by the way, are knowledge translation products themselves. We often feature people who have interacted with these resources and provide ongoing education about them.
I feel very passionately about this topic because both my blog and CREST.BD as a whole have helped me in my journey back to wellness.
So why blogs in particular?
Well, they’re extremely accessible. It seems like everyone and their dog has a blog these days. You can read them from computers, tablets, mobile phones, and even your TV if you know how to do that.
Blogs facilitate fast knowledge exchange, and this is particularly enriched by blogging platforms that have social media integration. At the click of a button you can post your content and send it to FB, twitter, instagram, RSS feeds, and other blogging platforms for the most connectivity as possible.
What I particularly like is blogging allows an easy way for people to connect to research. Instead of a traditional abstract, you can write a blog in lay terms and link to the abstracts and other primary sources. It’s kind of like a gateway drug for scientific literature.
The con with all this blogging stuff is there is a big learning curve when understanding this medium
So how does this all help me fight stigma?
Well, I’m sensitive to both research priorities and lived experience priorities. I can find the middle ground to make sure everyone is happy and feels respected by what is published.
It’s important to understand language discrepancies. The mental illness community has its own language just like researchers do, and so being able to literally be a language translator helps create more accurate information.
This facilitates the knowledge translation process and helps avoid errors that may slow research from informing practice and policy.
In this way, it help mobilize evidence-based knowledge into the public realm.
On the Bipolar Blog we have offered various authors the opportunity to help them find participants for their studies. As I mentioned earlier, this can be quite successful because of how connected blog posts are to the rest of the internet.
This also invites people with bipolar to interact with research in more meaningful way. You can think of it like stepping stones or baby steps for someone who doesn’t understand an abstract well to helping them get key points out of it.
I think future studies can also turn to blogs produced by the mental illness community to better understand stigma and how to help those who have bipolar.
Obviously the major implication for practice is more evidence-based information for patients.
This empowers patients in many ways. In a clinical sense, it could lead to better self-management or self-management in general. But obviously research would need to be done to see this in action.
But from my own experience, it can create a more meaningful clinician-client relationship. Being able to talk science with my psychiatrist has helped me feel more involved in my care and our conversations are much more rich. But I might be slightly biased because just last week my psychiatrist and I gave a joint public talk about therapeutic relationships. I digress.
The dual-role model I’ve described can understand the nuances of knowledge translation, and thus the process of turning research into policy can more accurately reflect both research and lived experience.
Adopting an action research methodology, which is a framework for bringing in historically oppressed populations like those who live with bipolar, can help the process of destigmatization in deciding the future of how bipolar disorder is treated.