ISBD 2017: My Presentation Slides and Text

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.

Evidence-Based Art – Video

In 2015, I created a series of illustrations to demonstrate how knowledge translation can work in bipolar disorder.

This uses the dual-role model; I am both a research participant and a researcher.

Watch the video to hear my commentary a year and half later after creating this project.

Enjoy!

How Knowing about Knowing Can Empower People with Bipolar

Research doesn’t have a great track record when it comes to the study of bipolar disorder — at least in terms of destigmatizing a heavily stigmatized condition. For the most part, research in psychiatry and clinical psychology has been based on the biomedical model. My main criticism of this is it treats bipolar disorder as a pathology of the body — as inherently unhealthy. It frames research to study ways to treat bipolar disorder with the priority of managing the illness and not necessarily looking at the person who has the illness — largely ignoring social and environmental factors. This lens puts people with bipolar in a disenfranchised position by making various assumptions about the nature of bipolar disorder and about the people who have it. But that doesn’t have to be the case anymore.

The wonderful part of research is it’s up for debate, and right now that debate is reevaluating the next steps in bipolar disorder knowledge. The wonderful part of knowledge is the way we come to create knowledge is also up for debate; this is known as epistemology, which can be simplified as theories of knowledge creation. I like to make analogies to psychosis to demonstrate just how flexible the boundaries of reality and our interpretation of reality really are. For example, biomedical research states that psychosis is a “break from reality,” implying that those who experience psychosis are experiencing false realities; if we think this way, we think that people who experience psychosis shouldn’t experience that anymore, as it can lead to harm to both the person and others. It’s not incorrect, but it’s not the whole story either. Imagine a different scenario in society: Psychosis is not a break from reality. Instead, an individual who has psychotic symptoms is experiencing a reality just as true as any other. Experiencing psychosis within this understanding does not pathologize it and allows it to exist alongside every other reality.

We can break these two examples down into two different assumptions about how we create knowledge. One assumes that there is an objective truth to the world and the other assumes everything in life is subjective and up for grabs. For example, if I say the word “chair,” what comes to mind? Probably something like this:

We objectively agree that a chair is something that has legs and a back that a person can sit on. There are variations, but certainly this is not a chair:

And yet it is, subjectively. I could sit on it in a variety of ways. By technical definitions, probably not a chair, and yet it is a chair; it has the ability to serve this function. The difference is perspective. I can either reject or accept (or maybe be confused by) the notion that both of these images are pictures of chairs. Never mind that I’m writing this from a Westernized, middle-class perspective that does not describe most of the world, which already demonstrates that knowledge is more fluid than firm. This ability to think creatively about knowledge has certainly provided inspiration for large leaps in technology. So are we applying this to bipolar disorder research?

We have to think critically about how the term “disorder” is being applied to “bipolar,” and even the term “bipolar” itself. Is it an “illness” or is it complex experiences of life? Or both? Or neither? I think there are many negotiations about how we’re creating knowledge about bipolar disorder and who is getting the chance to speak. I’ve previously outlined a brief “history” of bipolar disorder research and how more and more people who have bipolar are finding empowerment through research and having their voices heard. I think it’s equally important to contemplate the ideas I’ve presented here and what one’s stance is in reality. How is knowledge made? Who makes it? What does it end up meaning? Should it be accepted, rejected, modified? Knowing about knowing has an immense power to empower people who have bipolar. We can all benefit from incorporating these different perspectives into our daily lives.

Contextualizing Mental Illness and Recovery

Defining recovery has been a hot topic in my life lately. So what is recovery? There will be few answers in this post, but certainly lots of food for thought. I hope to provide a meaningful context in which to think about recovery. By no means will I suggest that there is a “correct” view of recovery. My only suggestion while reading this post is to keep an open mind.

How to Think about Recovery in the Context of Mental Illness

Is it a no brainer? Au contraire! This is an activity that requires your finest critical thinking hat you can place atop that wonderful think tank of yours (I prefer a top hat). Because examples are quite helpful, I will use bipolar disorder as my mental illness of choice (obviously). So let’s start by acknowledging that people with bipolar have different experiences with that disorder, as well as in life. If this is news for you, I recommend reading the rest of my blog. But for example, a common theme in manic episodes might allude to religious/spiritual experiences; I’ve yet to meet anyone who has had the same episode, or anything close to it. What I did in my manic episode may share common manic behaviours, true. Yet no one had the same milieu that surrounded my delusions, or my internal beliefs about how my world was manifesting. It’s like reading a short story; the structure is familiar, but the content is always different — even if the same topic is being told, it will be told differently. No one is me except me and my story is my own. Obvious, right? But I’m not certain we really think about what that means sometimes.

I have a theory that, for some, our experiences in mood episodes are “extensions” or reflections of our personalities, our thoughts, our beliefs, etc. I know others disagree with me, expressing that such episodes seem to “come out of nowhere.” So already there exists the idea that there is a great deal of variance in the very nuances of just one single facet of bipolar. And it seems that this variance becomes even greater when moving toward a larger scale. That is to say, when we think about an individual with bipolar, we’re thinking about an individual life that is truly unique in all these “little” ways. From those particular X and Y chromosomes to home environment to what kind of schooling (or lack thereof) to cultural norms (or rejection thereof) to the passing of time — every individual has a unique cocktail of the human experience. It’s why identical twin studies are so intriguing, because no set of twins is exactly alike (in part due to epigenetics that we don’t entirely understand).

We could debate this for a while. OR I think for the sake of being practical — because, you know, stigma doesn’t fight itself — we need to accept this reality in order to help others (and ourselves) be healthy and mindful world citizens. So let us begin talking about recovery with this groundwork, or foundational knowledge, to guide us through various postulations.

So how is recovery defined?

I’ll begin with some academic definitions:

Recovery is “a voluntary maintained lifestyle… characterized by sobriety, personal health, and citizenship.”

This definition is offered by the Betty Ford Institute Consensus Panel (2007) and was written in the context of substance abuse/addiction (as used in the article’s abstract). It doesn’t seem, to me, like a very… informed way to understand a group of people (e.g. sobriety has no role in my life because I had any diagnosable addictions). Ironically, the first sentence of the article says “Individuals who are ‘in recovery’ know what it means to them and how important it is in their lives” (p. 221). Already I’m bubbling with questions of such knowledge: Do we know we’re in recovery? Are we deemed “in recovery” by ourselves or someone else or collaboratively? Do we actually understand the significance of what “recovery” means? Like, what does it all mean, man? But seriously, already this makes a lot of assumptions about the person “in recovery.”

Here we are trying to define recovery and suddenly we’re barraged with another large concept of being “in recovery.” We could say the two go hand in hand, but that’s another assumption that actually might be incorrect. On a scale of 1 to “godly intuition,” how certain can we be about the relationship of two things we just started talking about a couple paragraphs ago? I’m gonna go with a -3 until I know more. Onwards:

Recovery is “…something that individuals experience, that services promote, that systems facilitate, yet the specifics of exactly what is to be experienced,  promoted, or facilitated — and how — are not often well understood…”

I enjoy this definition because I think it reflects the reality of recovery. I also like that it admits something we don’t admit enough — we don’t have all the answers. It comes from a 2001 article by Jacobson and Greenley (noted on p. 482) that offered a model to help the state of Wisconsin develop a “recovery-oriented” system for mental health. This particular article claimed that talks of recovery began formally in the 1980s because of research on severe mental illness. That’s over four, almost five, decades ago. The first definition presented here was offered ten years ago; read it again and see just how new it sounds to the authors. It’s like they had an epiphany about a reality many had been living, and still live.

To return to this first definition, a later article in 2012 by McLellan revisited the notion of recovery set by the original authors and offered some criticisms. The first criticism, and perhaps one of the most important ones for our argument here, is that recovery ≠ how recovery happened. Why is this notable? I’m so glad you asked!

Recovery is a Dynamic

Um, what? Feeling a little weird about this one? That’s okay. I’m still figuring out if I’m being clever with this term or if I have no idea what I’m talking about. Maybe a bit of both.

So here’s where we come back to the individual. We noted earlier that everyone is unique. On top of that, we might assume that individuals interact with ideas uniquely. From this point of view, we can ask how one person understands the concept of recovery as it has been labelled in their lives. The labelling part is pertinent to this argument because it changes our rejection, accepting, or modification of our experience of being “in recovery.” Change is why I’m making a dangerous move of defining recovery as a dynamic. To be a dynamic installs a force that stimulates a process of change or progress within an existing process. To put that in human speak: Recovery at its core is an agent of motion. To put that in more human speak: Recovery is what you want it to be and you don’t have to “enlist” recovery as an agent in your life. This allows people to connote the word recovery and make it meaningful in their own lives.

Elaborating on the Process of Recovery

As someone with a mental illness, I’ve thought about being “in recovery” before and identified with it. I don’t identify with it anymore, and I don’t see myself as “recovered.” Recovery itself no longer feels applicable in my life. Many might argue that having a chronic illness — as bipolar disorder is considered — that there is no complete recovery, only periods of being “well” and “ill.” To me this means one of two ideas: 1) one is always “in recovery,” or 2) we don’t fully understand every individual’s experience of their own mental illnesses. Seeing patients/clients “recover” from destructive mood episodes is one thing, but to put that label on them beyond that experience? Is that okay? Are we dichotomizing illness and wellness to an unhealthy extreme? My gut instinct here is to say people with mental illnesses have been subjected to realities shaped by research not informed by the reality of mental illness. Judging by the history of caring for the mentally ill and how much stigma I still face in my daily life (in and out of academia), I think it’s fair to say that.

So what is recovery?

What do you want it to be? Or rather, what do you want it to mean? Recovery, as I’ve argued here, is a concept that is shaped by an individual’s experiences. Some picture recovery as a before and after approach that grieves a “lost” self. Some see recovery as a lifelong journey that will always have bumps in the road. Some (like myself) are stubborn and rebellious and just don’t see the point in applying recovery to life (another post for another time). I don’t think this is something that necessarily needs to be defined so long as we appreciate it has many definitions. We can accept that every person has their own perspective, their own truth. This is messy and doesn’t sit well in post-positivist research that requires nicely packaged definitions and generalizations. But this is a reality that exists — we might even go as far as to say multiple realities because of the complexities of perspective in mental illness (e.g. psychosis).

Agree, disagree, partially agree, throw your hands up in rage or confusion — it’s all good. This is an ongoing conversation (like every other topic ever). There are many facets that I’ve left out of this because I don’t have time to write a book right now. But it’s a piece, a chunk to chew on and perhaps engage with in the larger domain of helping others through their struggles.

Intelligence and Bipolar: What are we talking about?

It’s time to address the idea that people with bipolar can be and are intelligent. Actually, I take that back — it’s time to address the idea that we’re not actually talking about intelligence. There’s often this question of how well people with bipolar function in life and what cognitive challenges they have because they have bipolar. Enjoy the following research-inspired rant on intelligence, stigma, and bipolar:

What’s methodology got to do with it?

The way in which researchers go about collecting information can be difficult when it comes to researching people from “vulnerable” populations. Stigma is a barrier in recruiting people into studies; studies often have small sample sizes because people have (good) reasons for not wanting to identify as a person with bipolar. Even though they are offered compensation for their time and everything is strictly confidential, it can be downright terrifying to go into an unknown situation. In the past when I’ve been a participant in research, I never knew what to expect and I hadn’t gained the confidence (nor the knowledge) to feel prepared in such a situation. So, as you might imagine, it was a very anxiety-provoking experience for me. How the researchers handle this is a very important task.

Now working from the other perspective, I can more clearly identify problems that may result in the stigmatizing assumption that people with bipolar aren’t intelligent. Really, the problem isn’t about intelligence, otherwise known as IQ. So let’s talk about IQ.

What is intelligence?

There is a common definition amongst us humans that intelligence = how smart you are. That kind of simplicity just doesn’t cut it in research, so when we talk about intelligence we’re talking about a word that encompasses a lot of different aspects (like how well you can arrange blocks on a table under pressure — no, I’m not joking). IQ has a history, and a probably surprising one if you don’t know it. It is thought to be first conceived of in France by Alfred Binet in the late 1800s to early 1900s. This test was designed, in so many words, to help figure out special needs children in classrooms. It has been reworked multiple times since to attempt to quantify a specific type of “intelligence” (cognitive versus emotional, for example). This test was called the Binet-Simon Scale.

The Binet-Simon Scale was “improved” later in the 1900s by a Stanford psychology, Lewis Terman — a man who was known as a enthusiastic eugenicist; he believed intelligence was heritable. Some of his support for this claim involve using his Standford-Binet Scale on African and Latin American students (though he used other words for them), who scored poorly on his test. Why? Because for those of us familiar with the US of A, we know about segregation and other socioeconomic factors that resulted in poorer education for people who weren’t white; this would be one reason why people of those ethnicities wouldn’t do as well on his test. Yeah, he was a massive racist. Remember that moving forward.

The Standford-Binet Scale, after having been revised numerous times, is still used in various settings — but what it’s based in is being used in an educational environment (school or job placement, for example). I don’t think I’ve seen it used in bipolar disorder research, but I should hope that makes sense — the context is completely different when trying to figure out the needs and desires of someone living with a medical condition. What has been very prominent in psychological research, though, is the Wechsler Adult Intelligence Scale.

This test has also been revised multiple times and I’ve actually sat down with a psychologist-in-training to do the test. It’s a long test. A very long test. I believe it took hours, and what I remember most is how many blocks I had to arrange on a table (which apparently I scored very well on!) and if I knew who Sacajawea was. For those curious, I scored average on intelligence. I tend to think of it as scoring average on not falling asleep due to boredom. So I hope that provides some background of “intelligence” and particularly what kind of intelligence we’re talking about (hint: it’s not emotional).

So are people with bipolar intelligent?

I hope I have demonstrated that this is not the question we need to ask. If we are asking it, perhaps we need to evaluate how we’re putting an entire group of diverse people into a box and putting yet another label on them. The question we do need to ask is this: Do people with bipolar have cognitive disadvantages because they have bipolar? Another question we can ask is this: How well do people with bipolar function in everyday life? I see a bias in previous decades that views the bipolar patient as nothing but bipolar. I also see, in my day-to-day life/work/studies, people who still think someone like me doesn’t have a general wherewithal to live life, nevermind to thrive in it. So let’s get into this stereotype that people with bipolar can’t function or be cognitively aware enough to pursue life to the fullest.

Having Bipolar ≠ Having the Dumb

I jest, but I’m also serious. I’ve encountered people who are absolutely surprised (“I had no idea!”) that their fellow grad student has bipolar and is striving for a PhD. Having always been on the inside of this situation, it baffles me that someone would take the label of bipolar and automatically assume that’s all I am. Even further, I’ve often heard I “must be” the exception. I can’t fully explain how meta-frustrated I can get sitting in a meeting hearing people with mental illnesses being marginalized when the people I’m sitting with know of my mental illness status (yes, I do call them out on their bullshit and the cognitive dissonance is just a trainwreck). Of course, we should never assume one person is representative of an entire population; this is the problem in the first place. So here’s my solution: Let’s just stop assuming negative things about people who have mental illnesses. Can we do that? Is that a thing we can do? Yes, it is. I’m so glad we’ve had this talk.

Some of the Real Problems People with Bipolar Face

STIGMA. (Have I mentioned that yet?) Some say (myself included) stigma is the worst part about having bipolar. Another thing, though, that pertains to this argument is why exactly there are low-functioning and high-functioning people with bipolar. Were I writing a formal paper, this is where I would cite study after study with contradicting results of low- versus high-functioning people with bipolar, cognitive functioning, and so forth. To be completely honest, I’m frustrated with a lot of this research because I feel like it hasn’t been done humanely (and too quantitatively when I feel qualitative should precede such research). This is not to say that people with bipolar are being mistreated in research, but one could certainly make the argument for being misrepresented. Note: I’m not devaluing this research; it’s been an important part of allowing the process of better research.

Having people with bipolar involved in asking these questions is the best way to know the answers. There is evidence that people with bipolar have reduced cognitive functioning, and many researchers offer interpretations of why this is. For me, it’s medication side effects that has the most significant effect on how I function. There was a time I was on divalproex sodium and I couldn’t read a paragraph without forgetting what I had just read. When I have to take quetiapine to ward off mania, nothing productive gets done in the day(s) that follows. But right now as an “euthymic” person (i.e. not in an episode), I’m totally fine. I’m finishing my master’s degree next year.

Yes, there are people who are not as high-functioning as me, for example. But we can’t put all the onus on the “bipolar” and say that cognitive deficits and low-functioning are inherent. To be fair, of course, there is evidence to suggest a biological counterpart. However, every person is surrounded by an immensely complex social environment that can deeply influence someone in so many ways. Coming from poverty is a major disadvantage in life that may cause a certain string of events that result in not getting good K-12 education or ending up in risky social situations (e.g. heavy drug use). Being overly medicated by clinicians and not being able to advocate for oneself is another factor. Having a society that cuts down on hospital beds for psychiatric patients due to budget deficits doesn’t help. Not having services available for people to get back on their feet after an episode/diagnosis contributes to poorer functioning. And a lack of social support is devastating for anyone.

I am heavily influenced, as an academic, by social theories. I don’t discount biological or psychology theories — I am a fan of biopsychosocial approaches. But right now it is my belief that social theories are underutilized in bipolar disorder research.

Ranting aside, here’s my conclusion (for now):

Research is a flawed process and science is constantly trying to better itself. This doesn’t mean we discount past research; it’s a necessary part of the scientific process. So we don’t look at the past and say “nah, they got it wrong.” We look at the past and think about it critically, take the good parts, and continue moving forward. When we visualize someone with bipolar in terms of cognition and functioning, we must visualize the history of intelligence measuring and how this history has affected how researchers try to understand the illness (among other topics that have influenced these subjects). We need to look at the people behind the research just as much as we need to understand the participants through their own voices.

Stigma is a barrier not only in terms of conducting research, but for people like me who just want to be content in life. Stigma affects research methodology and it affects cognitive functioning. It’s in everyone’s best interest to take steps to reduce stigma in society. Thus, once again stigma reigns supreme in its influence in an argument.

Think I’ve got it wrong? Let’s debate!

Angry about the lack of sources? Email me (ntk@redefiningbipolar.org) and I’ll send you papers.

Differing Identities in Bipolar Disorder

Identity has been and still is one of my favourite areas to research, especially when it comes to bipolar disorder. Lately I’ve been entertaining the idea of people needing to navigate “differing” identities in the instance of bipolar illness and wellness stages. What I mean by this is, in theory, some people who have bipolar have to manage separate selves, as I recently read in this very small qualitative study. The problem with small studies like that is they 1) often provide only a glimpse into the topic, and 2) may not generalize to others with bipolar (though that may not be the goal).

This topic of identity is a very under researched subject in bipolar disorder for a few reasons. One of the most significant reasons is the emphasis on biomedical treatment (i.e. medication). Quality of life, or one’s subjective view of one’s life, has been studied for decades; interest has grown dramatically since 2005, the year that review was published. It’s this interest in quality of life that I think has pushed questions of identity into the spotlight. After all, it might be considered intuitive by some that subjective feelings of one’s life are inherently intertwined with subjective feelings of one’s self. It has been noted that there’s a relationship between self-esteem and identity (p. 32), although this is an avenue in need of more research.

The question of “who am I” is perhaps older than any written text in history. Psychology has been most notable for attempting to quantify identity and find commonalities — perhaps universalities — among humans. When I examine this question, I think of human development; when I think of human development, I think in terms of Urie Bronfenbrenner’s bioecological model. This model attempts to explain the intricacies of human development by including elements not often thought to affect development, such as symbolism and interactions between individuals and physical organizations. In terms of explaining identity, I think it properly justifies the complexity of someone’s identity formation.

Once upon a time I would have said bipolar disorder is a special identity that sets it apart from other identities. While I think it’s true that bipolar disorder changes identity and perhaps splits it into fragments in unique ways, I’m mindful that this also occurs with other conditions. Perhaps a good example for this is in illness identity literature as a whole, or the extent to which an illness influences how people think of themselves — and there are, obviously, many illnesses in this world.

Don’t get me wrong, though; mental illness identity is a distinct phenomenon that has also been studied for decades (but, again, understudied). A common theme I often see is the duality of the self, which I think is particularly poignant. There are these differing identities in bipolar disorder, and I would even go as far to say there are multiple differing identities (depending on the context). For example, there might be the selves of mania and depression, but also the selves of illness and wellness.

Understanding identity in bipolar has significant implications for treatment. Treating bipolar is not just treating the body, but also the mind and heart. Identity could be a modifier in treatment. When an individual is well versus unwell, treatment goals are different. The self presented in treatment could and does vary throughout recovery. Identity grows and changes from pre-diagnosis to diagnosis to post-diagnosis. But how, why, and what does this look like? Questions in need of answers — and the answers are most likely on a case-by-case basis.

But I have one solution for the time being: Incorporate questions of identity exploration in treatment. I, too, had a loss of self when I received my diagnosis. I, too, think of my current identity in parts not entirely integrated at all times. Really, I think my identity journey is in its very early stages. It can be extremely rewarding to be able to discuss this in treatment and to explore it on my own. Thus, I think it should be an integral part of the bipolar disorder conversation, both in practice and in research.

Suicide and Psychosis: The Missing Reality

There are two large, notable problems in understanding suicide and psychosis: 1) We’re scared to talk about suicide, despite this being the exact opposite of what helps save lives, and 2) psychosis is an empirically unsound construct. What do I mean by the second bit? Well, let me walk you through my logic here. I recognize in advance that there should be sources than I cite here; a lot of this information comes from years of sorting through both research and individual experiences in coming up with answers that have yet to be addressed formally. I’m happy to provide articles on topics by request. So:

Before the DSM-V (“Diagnostic and Statistical Manual of Mental Disorders,” the US’s and Canada’s leading guidebook for mental disorders), psychosis was either something you had or didn’t have. In fact, every “disorder” was seen as categories and people were put in nice little boxes to fit this or that diagnosis. The DSM-V moved toward a dimensional approach, meaning that instead of “you either have bipolar or you don’t,” it’s now recognized that bipolar disorder is a spectrum of various behavioural, cognitive, and affective symptoms. Clinicians that I consider ahead of the times have told me they see the DSM as a starting point for treatment, but the magic is really in a combination of the clinician’s expertise and the client’s expertise as the person having such experiences. I was also exposed to a refreshing idea last week about the validity and reliability of diagnoses. For example, these diagnostic categories have often been based on clinical populations — not people living well with the same diagnosis. Further, often convenience samples are used rather than randomized sampling; instead of randomly picking people who have this diagnosis in a large community of people, samples have often come from people in hospitals — it’s easier to find samples this way, but the validity and reliability goes down. Insert a complicated stats discussion here.

Back in ye olde days of psychiatry (which, mind you, was just last century), psychosis often concluded in a diagnosis of schizophrenia. Now, psychosis is seen as more of a standalone experience, or a co-morbid one. For example, we have evidence of postpartum psychosis and depression with psychotic features — both of which can end in suicide. The experience of psychosis itself is incredibly unique for each individual. Hallucinations and delusions, for example, vary immensely from experience to experience. During one manic episode, I thought I was in contact with a divine being who I centered my life around for months; on the flipside, I once had a depressive episode where an older woman kept screaming at me sporadically. Anyone open about their psychotic experiences has a different story to tell.

On the topic of suicide and psychosis, research has snippets on many different kinds of experiences — from voices telling people to end their lives to unbearable hallucinations where suicide seems like the only escape to delusions of self-sacrifice. Type in “suicide and psychosis” on Google Scholar and you’ll see what I mean. Both suicide and psychosis are hard enough to talk about on their own; imagine how hard it is for someone navigating both simultaneously. I can tell you from firsthand experience that suicide seemed like a great option when I was stuck in a room with a ghost yelling at me while I sank further into a void of pain and suffering.

I called this the “missing reality” for a number of reasons. Imagine you were in the room with me when I had that experience. What would your reality look like in contrast to mine? Completely different, I imagine. The missing piece here would be the discrepancy between your reality and my reality. There’s a reality in between that acknowledges both are true at the same time, but we have a hard time accepting this paradox. Instead, we choose the label of psychosis and automatically assume the other reality is the right one. An invisible woman was screaming at me and I wanted to die; no one can say that wasn’t real, even if someone was in the room not hearing what I was hearing. It’s extremely difficult to understand if you’ve never experienced psychosis before. To most people, I just wanted to die for an irrational, untestable reason.

We have a long way to go in understanding the relationship(s) between suicide and psychosis. I’ve provided just a glimpse into this topic. Psychosis in particular is one of the most stigmatized mental health experiences, and pairing that with suicide makes for an even more difficult conversation. But, I suggest we can have these conversations on the basis of acknowledging this missing reality — the reality that psychosis is a valid reality for those who experience it and should be treated as such rather than silenced. Suicide happens across this spectrum of realities. It’s not much different than having an argument in a relationship; both of you have valid perspectives, but both of you need to try to understand the other’s. Yes, people who experience psychosis do need to try to see the missing reality as well. As much as I know what I experienced, I acknowledge that someone would have observed something else entirely.

What it comes down to, I suppose, is empathy (how many times have I said this?). Reality if fluid; can you remember a time when you disagreed on a memory with someone on a trivial event you both attended? These are complex phenomena, a lot of which I’m not qualified to discuss because I’m not a neuroscientist. But we can approach them with curiosity and compassion. Empathy, empathy, empathy.