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.

Gadgets and Guidance for Sound Sleep

Sleep is important for everyone, no matter your mental health experiences. It’s especially important for people who have bipolar. It’s somewhat common knowledge for us folk who do have it that getting an average, healthy night’s sleep is stabilizing. When some people don’t sleep enough (or at all), this can be a sign of an upcoming/existing hypo/manic episode. Years ago, before I was diagnosed with bipolar, I lived a month where I was getting around four hours of sleep every night — in addition to waking up feeling absolutely refreshed and doing a 5k run at 6am. Talk about productivity, right? Well, that’s not sustainable for the body or the mind, unfortunately.

Some research suggests that dysfunctions in the sleep-wake cycle (i.e. part of the circadian rhythms system) are partly responsible for these changes people with bipolar can undergo. However, there are some problems in studying this quality of life area; one study argues that we are still developing ways to understand this situation. It’s a complex biological debate, but nonetheless we can subjectively agree that sleep is important for all areas of health. So over the years I’ve tried out many techniques to help me get better sleep. Here are some tools I use to make sure I find my sweet spot for a good night’s rest.

The Bedtime Routine

It took me a long time to comply with having an adult bedtime (as I’ve written about before). But after so much trial and error, I’ve produced enough personal evidence to know having a fixed sleep and wake hour really does make a difference. I used to see a psychiatrist who was big on sleep hygiene; as much as I hated those lectures, I ended up learning a lot and using that knowledge. Before I get to my sleep routine, let me outline some key gadgets that aid me every night.

Sunrise Alarm Clock Simulator

At first I was skeptical, but if I had to choose one sleep gadget it would be my sunrise simulator alarm clock. I have the Philips HF3520 Wake-Up Light, which looks like this:

It’s pricey, but completely worth it. It has a sundown setting that I time for 30 minutes so by the time I’m done with my routine and in bed, it’s dim and only minutes to turning off. What I also love about this clock is it wakes me up without any noise — just light. I never thought that would work, but it’s made getting up in the morning so much more peaceful. Strangely enough, I even think it’s trained my body to wake up at the same time even if I don’t set the alarm for the dawn simulation. But for days when I might be extra sleepy (like if I have to take extra meds before sleep), it does have nature noises that go off at the exact time the alarm is set. It has really made a difference in my sleep-wake cycle. Another bonus is it doesn’t wake my partner up, who has a completely different sleep schedule than I do.

Aromatherapy Diffuser

I’ve always been big on the uses of smell, probably from growing up in a household that regularly burned incense or used essential oils. One scent that has some evidence behind it in helping sleep and eliciting calmness is lavender. Anecdotally, I know many people who find smelling lavender calming — myself included. So every night when I set my alarm clock timer on, I put some lavender oil in a diffuser that shuts off when it runs out of water. I use this Sage diffuser, which looks like this:

It’s an older model I bought a year or so ago, and I don’t recommend it because the black version that I have is losing its colour, which flakes off and gets in the basin. But it does its job for the time being. What I do recommend is getting a diffuser that does NOT have any external lights, which is a nice segue for another sleep gadget I use.

Towels!

Yes, towels. But it’s only because I’m poor and that’s what I’m currently using to cover my bedroom window so the room is pitch black. There are many curtains and other methods of blocking light from the room, so get creative if need be. In order to get around the different sunset and sunrise times that change throughout the year in my lovely home of Canada, this is one of my necessities. I spent a terrible month without an entirely dark room and my sleep quality was much worse. Having a dark room gives me control over my sleep schedule and apparently does make quite a difference in staying asleep throughout the night (here’s a great article for related ways to help stay asleep during the night). And speaking of fabric…

A Comfy Bed Makes for Comfy Sleep

I have scoliosis, which is a curvature(s) of the spine (which in turn rotates my ribcage so it’s misaligned). Having a comfortable bed is not just good for sleep, but necessary to reduce my physical pain so I can fall asleep. I don’t have a fancy bed, but I do have a memory foam mattress topper that conforms to my body shape. If I sleep on an uncomfortable bed, I wake up in pain. That starts the day with not a great mood, not having slept well, and less energy to concentrate and live my life the way I need to. Mental health and physical health are interconnected in this way and in some many others.

Medication Regime

Since every person who has bipolar takes different medications to manage the condition, this is a topic I can only speak to from my own experience. I only take one medication that makes me drowsy (clonazepam); I take it with the rest of my medications at dinner, which is usually a few hours before I go to bed. Over time, I’ve found this gives me a nice “cooldown”; I don’t feel the drowsy effects for a couple hours. So it’s imperative that I time my medication intake right, otherwise I find myself either not sleepy when I go to bed or too sleepy when I still need to be awake. There was a lot of trial and error involved in figuring out this relationship, but I encourage others to pay attention to how medications influence sleepiness and how they can be used to help guide oneself to sleep.

“As Needed” Medications

The only PRN (pro re nata; “as needed”) I take when I need it is quetiapine. If feeling hungover in the morning sounds awesome, then consider this an awesome medication. It’s something I only use if I’m wide-awake with a billion thoughts that I can’t control even after an extra tablet of clonazepam. Again, this is specific to me and not to be generalized to anyone else. But having a sleep “backup” plan is imperative for people with bipolar; it needs to be a conversation with one’s healthcare practitioner. Sometimes sleep hygiene isn’t going to work, and that’s when medication can be a lifesaver. Reminder: It’s okay to take medication, especially if it prevents deteriorating mental health.

Other Tips

Here are some suggestions that I’ve learned over the year that may or may not work for some:

  • Avoid blue lights, like tablets or phones. However, most devices do come with red/orange light filters. I use f.lux on my Macbook because I often do my best work at night.
  • Use the bedroom for sleep and sex only. Leave the electronics out. Associate that one room with good sleep (and sex, but I suppose you can always move that to other areas of the domicile).
  • Don’t exercise! Or do — I actually find it very unwinding to do intense exercise in the evening, despite what seems to be pop psychology saying the opposite. Another trial and error situation.

That’s about all I can think of in my quetiapine hangover — a hangover which is paradoxically helping me wake up earlier by helping me going to sleep earlier. I do this when I’m about to travel to a different time zone and when I have early flights to catch (like the 6:30am one coming up for me this week). I’ll emphasize again that this is my context and should not be generalized to anyone else. Always collaborate with a healthcare provider before using medication in any way. In my context, this gradual sleep change helps keep my mood and related mental functions as stable as possible. But, of course, medication is only one tool in the toolbox of a sound sleep.

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!

Nuanced Anger

Emotions are complicated for a myriad of reasons. It can be difficult identifying what we’re feeling at any given moment. We may not have the language to express our emotional states. And when we do, sometimes it seems like no one just “gets it.” Anger is an emotion I’m particularly familiar with — even enjoy, depending on the connotation. I wanted to share my “types” of anger in hopes that it will give deeper meaning to how nuanced emotions can be.

Social Anger

One of my favourite ways to be angry is when the rage is sparked by human rights or other injustices in the world. Physically, it feels passionate; it’s like the kind of anger you could have sex with, as ridiculous as that may sound. It’s motivating, inspiring, and has momentum. When I feel socially angry, I feel a call to action and take it. This usually plays out in the form of writing. Sometimes, though, it can feel like it’s consuming me and it becomes counterproductive. That’s when I have to do some serious cardio to tone it down a notch. Otherwise, it’s a fire inside that can get a tad bit too hot. But I love every moment of it.

Sad Anger

I recently discovered this in myself. It’s like a depressed but fiery resentment that wants to lash out but feels too sad to do so. Often it comes with feelings of indignation, but also an underlying current of despair that is certainly invisible on the surface. In a sense it’s an anger that hides pain, that masquerades as defiant rage — fuming on the surface, but moping within. When this feeling shows up, I tend to be short with people and have an overwhelming sense to escape but also to take it out on someone. Inside my head I’m telling myself that I was right to feel a certain way about something and that no one seems to understand that.

Stubborn Anger

“I’m not moving on this,” I say to myself when I know I’m right and channeling hate at a certain concept, situation, or person. On many occasions I have linked this specific anger with bureaucracy; it’s different from social anger in that I find it extremely unpleasant to feel. Stubborn anger feels stressful and comes with an unending barrage of unpleasant thoughts. This anger lingers in a very unproductive way, in a way that can lead to sad anger but doesn’t always. I don’t use the word “hate” often, but if I were to use it I would probably be feeling stubborn anger.

And sometimes I’m just angry.

Part of the package of my bipolar is just being angry sometimes. There’s no thought to trace it to, no circumstance, no behaviours that went into it or go out of it. Perhaps it’s akin to feeling uncomfortable. I’ve found that clinicians have pathologized this with me in the past beyond saying “it’s just part of the package deal.” Anger can exist by itself. It can rise to the surface as if to say, “Hey, just doing the rounds today. Don’t worry about it.” Not fun to deal with, but it is what it is. Yoga usually does the trick.

I could write in elaborate detail about instances of these emotions, which are far more complicated than what I’ve described. They’re worth more than just a paragraph of detail. But I’ve found a lot of people along my journey haven’t gotten an explanation of emotions beyond a normative way of experiencing anger. Emotions can be standalone, but they also live in context. This is not a simple terrain to navigate.

What has helped me, and continues to help me, map out my emotions are three main things: Talking with people I trust, journaling, and drawing. Art is such a wonderful medium for exploring one’s mind, especially because its metaphoric quality is so fruitful in exploring emotions. Of course this must be done safely, especially since anger can be a destructive emotion — and when it feels like that to me, I’ll play video games or exercise. But when done with care, examining anger can wield very significant results.

Sometimes Lithium Makes Me Feel Boring

Lithium… my saviour, my stability, my solace from manic melodies. But sometimes it just makes me feel like I’m always in the shallow end of the emotional pool. Yet the question I always wonder is if I’m actually swimming with everyone else. Have I lived my life in the deep end of the pool? Sometimes I see the divers at the other end and I want to go back. I want to drown in deeper emotions. I feel like lithium has made me the boring one.

How do I know this is lithium’s doing? Well, that would be trial and error (or more like error and “yup, definitely need to take it”). Don’t get me wrong — I function well on in. Despite some minor issues with memory, it’s just a white and dusty pill to swallow at the end of the day. Taking lithium is like being upgraded to business class by accident and then knowing that you can only afford to be in economy; I know the glories of a larger and more comfy chair, but I’ve settled on financial responsibility.

On days like these, the temptation is in the air. I remember having a wider range, a more extensive capacity for emotion. I remember feeling like electricity was a constant current through my body — supercharged and truly high on life. It wasn’t entirely dysfunctional; in fact, it felt quite functional and immensely inspirational. I saw with emotion just as I saw with my eyes. Life was on fire in such a good way. Emotions had become a sixth sense.

I made a trade off for a healthier lifestyle overall and I don’t regret that. I like to tell others that what they felt and did in mania was them and they can take that back from mania if they so desire. Even though on the worst days I feel like I’m floating in vacuity, I know that my manic emotions are inside me. How do I access those emotions in a healthier way? I believe it is possible, even on medication. The quest, then, is on figuring out how. Somewhere inside me that spark still exists. If only I had a map.

Perhaps that is one of the frustrating features of the bipolar reality. Such a journey requires a lot of safe exploration into dark uncharted territory. It’s not the kind of path to walk alone, although in some ways it will have to be. No one else can reach into the crevices in my mind and pull out exactly what I want. But many can aid me when I take the wrong fork in the road or have to dodge a car. One does not run out into the night without a flashlight (or a friend who has one) — even though that can seem exciting in its own right.

Even though I feel like banging my head against a wall because I feel so dull, I know it will pass. Rather, I know I can do something about it. I can work with my psychiatrist, I can talk to my partner and my friends, I can journal (or tell the internet about it), and I can research the not-well-understood literature on emotions. The process can be just as nurturing as the desired end result.

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.

Upcoming Events, World Bipolar Day, and Apologies

First, I want to start off with this: This morning I was wondering, “I’ve had my contact form installed for a year and no one has used it?” Well, people have used it, actually. So, THANK YOU SO MUCH to those of you who have sent me heartwarming and personal messages. What happened is the app I was using hadn’t sent me any notifications that I’d received any mail, so my apologies go out to those of you who have tried to be in contact with me without much success. In that vein, I’ve also created an “ask anonymously” link in the navigation bar; you can now ask me questions without the barrier of social anxiety. I’m currently setting up a better system for receiving submissions, but I promise from now on I know where to find those messages.

Upcoming Events

World Bipolar Day is on March 30th every year (the birthday of Vincent Van Gogh, who is thought to have had bipolar disorder). If you’re local to the Vancouver area, you can find me that night at the HOpe Centre in North Vancouver with the CREST.BD team. We’ll be doing an informal q&a and everyone is welcome! RSVP at hopementalhealth@cmha.bc.ca and see the poster below for more details:

“Me and My Doc Talks”

On April 27th, I’ll be speaking with my psychiatrist in an ongoing speaker series sponsored by Vancouver Coastal Health and the Assertive Community Treatment. Again, all are welcome (it’s not for healthcare providers only). It’ll be a very informal discussion between my psychiatrist and me, with a brief educational component I’ll deliver at the end. See the below poster for RSVP information:

International Society for Bipolar Disorders Conference 2017

This will be my first year attending the conference (May 4th-7th in Washington, DC), and I’m presenting! Come check out my presentation on blogs on the 6th during the afternoon rapid communication session if you’re also in attendance.

Health xChange Presentation

The Michael Smith Foundation is hosting a Pecha Kucha style series on May 9th in Vancouver. This is a fairly new event that I’ve been accepted to present at, but I’ll also be talking about my blog and the CREST.BD blog that I oversee. Stay tuned for more updates on that.

News

I wrote last year that I had hopes for new content on my site. Well, that didn’t happen. But it’s to be expected, I suppose. I’m finishing my master’s degree this summer, and starting full-time work and a PhD application! So there’s a lot of excitement meshed with a lot of stress. Things will calm down (and maybe pick up for my content) when I adjust to my new lifestyle.

Thank you for your continued support! Your kind messages give me strength to continue Redefining Bipolar in moments of doubt.