On Bell Let’s Talk Day 2020 – January 29th – CREST.BD network members Dr. Erin Michalak, Dr. Rob Tarzwell, Stéphanie Fontaine, Ryan Tine, Dr. Emma Morton, and Catherine Simmons took to Twitter for CREST.BD’s second #TalkBD event. Twitter users submitted a variety of questions about BD, which the team answered from both a lived experience perspective, and the perspective of medical professionals and researchers.
We’ve compiled all the questions and responses from the both this year’s #TalkBD event, as well as 2019’s, and categorized them into different talking points. Last year’s conversations also featured contributions from our partners at the International Bipolar Foundation and UBC Psychology.
Mental health support on campus
Dr. Erin Michalak:Such an important comment, thank you. This is an area that needs a lot more research attention. It’s one focus of our new Bipolar Bridges study, please get in touch with us directly if you’d like to learn more or connect.
Catherine Simmons:
Stéphanie Fontaine:Your experience is so much alike mine a few years ago. Here’s what I did that definitely deteriorated my state: isolated myself from the community I lived; stopped contacting my family/friends at home; concentrated only on work, didn’t listen to doctor.
Dr. Erin Michalak:Broadly speaking, there are a range of organizations dedicated to supporting people with mental health challenges at school or university. The relationship between education and BD is fully explored on our Bipolar Wellness Centre (bdwellness.com/Quality-of-Life-Areas/Study) and we list a number of well-regarded tools and organizations (bdwellness.com/Support-Tools/Resource-By-Area/Study).Most campuses have an office that provides assistance for students with disabilities (such as mental health conditions) that can help you get academic accommodations. Academic accommodations could include assignment extensions, test-taking away from the classroom environment or learning assistance as needed.
UBC has a mental health & wellbeing strategy: wellbeing.ubc.ca/mental-health-resilience … and a number of awesome student-led support groups incl. the-kaleidoscope.com & UBC Mental Health Network. Not to mention the important work CREST.BD does to advance BD research and Mood Disorders Centre, UBC, an outpatient Mood Disorders Centre.
Bipolar disorder research
Dr. Erin Michalak:I wouldn’t say that there is currently a severe lack of research into BD. I would say that, as a field, BD research was quite ‘late out of the gate’ compared, say, to research into major depression, or schizophrenia.When we first established CREST.BD over a decade ago, one of the reasons we did so was because there was a general paucity of research exploring psychological and social issues in the condition. A lot has changed in a decade though, and you can no longer say that bipolar disorder is one of the ‘orphan conditions’ in psychiatric research. There are now many stellar organizations internationally focused on specifically advancing research into BD. In part, this is happening because of increasing awareness of the devastating toll the condition can have for the people who live with it, their communities, for workforces, and for society more broadly.More work also needs to be done to highlight the assets that people with BD bring to society. And, generally speaking, mental health research across all conditions remains woefully underfunded – this has to change.
Dr. Erin Michalak:At CREST.BD, our mission is to optimize the health and quality of life of people w/ BD & empower communities to engage in BD research. We specialize in ‘Community Based Participatory Research’ (CBPR) which means that everything we do, we hand-in-hand with people who live with BD, family members, healthcare providers and other stakeholders.These values also shape the way that our research programs (in the target areas of stigma, quality of life, and psychosocial interventions) developed—each was nominated and then chosen as a priority through iterative community consultation and engagement activities.Part of this community consultation process involves our Community Advisory Group, a group with members representing people living with BD, BD healthcare providers, and partner organization representatives. This group provides feedback and guidance across CREST.
We also build capacity for community engagement through strategic partnership building. To further enhance the reach of our community engagement, CREST.BD has established effective partnerships with approximately 17 diverse community and clinical organizations.
More details and specific examples details on how we involve the community in our research: bit.ly/2RXQktD
We’ll be going through a similar consultation process when we develop our next strategic plan (our current plan runs to the end of 2019) – please sign up for our newsletter (crestbd.ca/news-and-events) and we’ll keep you informed!
Self-management strategies
Dr. Rob Tarzwell:“Behavioural activation” is an effective antidepressant, which is why we recommend it, but of course, how do you get started when in the deep pit? One method is a depression buddy, someone you’ve given permission to be more involved when needed. The buddy’s job is to help you start those baby steps: “10 km maybe isn’t feasible today, but how about a trip to the end of the block with a nice treat as a reward?” Fellow mood disorder travellers are great allies for this.
Ryan Tine:I know how hard it is. I started with slow walks around the block. It began to serve a purpose. It’s about getting out of the environment for a bit. It releases endorphins. It’s what got me into camping. Now I’m a wreck if I don’t get fresh air everyday.
Catherine Simmons:It’s especially hard to walk alone. Having my parents force me out to walk with them worked, but it’s difficult for sure.
Dr. Emma Morton:‘Prescribing’ activity to treat depression is an evidence-based strategy called “behavioural activation.” It’s recommended for a few reasons. Behavioural activation can help to increase your exposure to things that are rewarding, problem-solve obstacles to engaging in rewarding activities , and to provide an alternative to activities that might be maintaining depression. When I say rewarding, I mean both things that are enjoyable or pleasurable, like hanging out with friends, as well as things that give you a sense of accomplishment or mastery – even something like making your bed or doing dishes.
The paradox of behavioural activation is that these things are very hard to do when we’re feeling depressed! A therapist might work with you to schedule activities ahead of time in a planner, or come up with a reasonable and achievable goal based on where you are at. This is why I prefer the words ‘take home practice’ or ‘experiment.’ If you weren’t able to do those activities because of your symptoms, it’s important to talk to your therapist about ways to change up the experiment to make it work better for you.
Finding the right balance between soothing/restful activities and rewarding/energising activities when you are depressed can be a challenge, and it’s okay to keep reformulating your plan based on your experiences.
Dr. Erin Michalak:This is a great question – we’ve been actively exploring effective self-care or self-management strategies for BD here at CREST.BD for nearly a decade. Here’s a section of a blog we wrote on this topic:As with all chronic health conditions, self-care or ‘self-management’ strategies play a crucial role. At a basic level, self-management in bipolar disorder refers to the routine activities the person undertakes to maintain wellness and stability. While the person with bipolar disorder is in the driver’s seat when it comes to enacting self-management behaviors, it’s often most effective if their friends, family and healthcare providers are also passengers on the journey, like a support crew. Ideally though, they’re in the back seat, enhancing the driver’s autonomy, empowerment and independence.Research illustrates that most bipolar disorder self-management strategies are akin to the healthy lifestyle behaviors many of us aspire to, regardless of whether we live with a mental health condition or not: balanced diet, regular exercise, sound sleep, and so on. It’s not so much that the nature of the activities is different for people with bipolar disorder. Instead, it’s the cost of not doing them that differs. Take sleep as an example. Most people can manage with a few days disrupted sleep. People with bipolar disorder, however, can be exquisitely sensitive to disruptions in sleep routine – the cost of not prioritizing regular sleep can be high (for example, increased risk of an episode of mania). This represents a mundane reality for many people with bipolar disorder. Going to bed and waking at regular times, avoiding late night stimulation, planning carefully for time zone changes when travelling, monitoring diet, caffeine and alcohol intake so as not to disrupt sleep are often tiresome, but necessary, activities.
(read the full blog here: crestbd.ca/self-care-bipolar-disorder-putting-drivers-seat/)
One of the questions we asked more recently was ‘what self-management strategies are most effective for stopping progression into hypo-mania or mania?” You can read the results of that study here: crestbd.ca/wp-content/uploads/2016/03/JAD.pdf
Finally, we are now seeking input a new study we’re designing to develop a comprehensive list of self-management strategies based on lived experience with bipolar II disorder. You can learn more about how to get involved in that project here: crestbd.ca/self-management-important
Stigma
Ryan Tine:Celebrities can have a powerful impact. I’m a musician and a frontline worker. BD & trauma tends to be quite prevalent in the arts & mental health workers alike. I tend to focus on people who have sought care and fought stigma, like Catherine Zeta-Jones or Lou Reed, as inspirations.
Dr. Emma Morton:When artists talk about their experiences of bipolar disorder, it can help break down stigma and draw attention to some strengths, like creativity and resilience, that many people with BD have. It can also be pretty moving and powerful to listen to music produced by someone who has shared an experience like bipolar disorder (which reminds me that we had talked about putting together a CREST.BD playlist for a blog).However, some media reporting about Kanye West has contributed to stigma, by attributing any negative personality characteristics or decisions to BD, or describing behaviour with loaded terms like ‘erratic’ or ‘dangerous.’
In Australia we can report articles that contribute to stigma to
@SANEAustralia Stigma Watch, which provides feedback and education to media outlets about responsible reporting on topics to do with mental health. In Canada mindset_guide helps journalists with responsible reporting about mental health, substance use and suicide.
Employers and bipolar disorder at the workplace
Dr. Erin Michalak:If you feel like you’re in a good position to, it can be helpful to educate your employer about your condition. Sometimes employers want to help, but don’t know where to start. For tips: http://bdwellness.com/employers. And keep an eye out for the upcoming APEC White Paper developed in collaboration with the Mental Health Commission of Canada on supporting workplace mental health!
Dr. Rob Tarzwell:Going in anticipating challenges will help you to face them, so although it seems paradoxical, you’re off to a good start. Keep on top of the mundane stuff: medications, sleep, and check in with your MD and other supports about these issues.Also, remember that everybody starting a new job worries about how they’ll cope, so you’re in good company. If things do go a bit sideways, consider asking for a period of work-hardening, with progressively increasing hours, to get your chops back.
Ryan Tine:Congrats! Going back to work can be a challenge and also exciting. I found it helpful to expand self-care. Reach out, rest, say what you need. Having a friend over for supper, another to help with meal prep once a week and encouraging texts was very helpful.
Stéphanie Fontaine:Congrats! This is such an achievement to be taking steps to return to work. You may discuss the situation in advance, hopefully with someone you trust (clarify/visualize/educate your employer).
Dr. Erin Michalak:Providing effective, evidence-informed support for people facing mental health challenges in the workforce is critical. In the ‘for employers’ section of our Bipolar Wellness Centre (bdwellness.com/employers), we summarize some of the steps employers can take.Key ways of taking action include:1. Learning about mental health conditions. The more you understand, the better able you will be as an employer to facilitate a mentally healthy workplace.
2. Making connections in your community. Find out where to go if you or one of your colleagues needs help for a mental health condition.
3. Understand that employers are powerful agents of change in promoting mental health. Get started today with one organizational change and see what benefits follow for your organization, workplace culture, and community.
Visit the ‘for employers’ section of the Bipolar Wellness Centre: bdwellness.com/employers.
We have also produced a series of videos on “Work & Bipolar” featuring CREST.BD member and performing artist Victoria Maxwell: bdwellness.com/Support-Tools/Videos
Dr. Erin Michalak:Thanks for the question! This was a topic Victoria Maxwell and I addressed in this webinar conducted in partnership with Partners for MH ‘Supporting a Colleague Facing a Mental Health Issue’ (youtu.be/RzgUEo4XDbA).And this video looks at disclosure from the perspective of an employee with BD: Bipolar Wellness Centre – Work & Bipolar: youtu.be/ejP-9SEYkuM
Treatment and medication
Dr. Rob Tarzwell:Major depressive disorder (“unipolar depression”) responds to typical antidepressants, but about 1 person in 6 with depression actually has bipolar disorder. If they get treated with antidepressants instead of mood stabilizers, it can trigger mania. While it’s possible you might not have had a mania at that time, what seems to be the case is that antidepressants are accidentally detecting a pre-existing bipolar disorder rather than causing it. Antidepressants must be used judiciously in BD.
Dr. Erin Michalak:If there’s one question I’ve been asked more than any other by people living with BD in my career, this is it. Yet, very little research has been conducted in this area.We’re aware of this small qualitative study performed by the The Spectrum Centre for Mental Health Research in the UK: Managing bipolar moods without medication: a qualitative investigation. – www.ncbi.nlm.nih.gov/pubmed/25527994 – what other work is out there?
Dr. Rob Tarzwell:Like many diseases, bipolar can be very tough to treat. One thing I find helpful with treatment-resistant cases is getting a multidisciplinary mental health team involved, and a second opinion, to see if any options have been overlooked.It’s humbling to realize maybe I missed a step in the treatment algorithm, but it’s far more important that a sick person gets on good treatment. So, you check your ego at the door and get a team involved.
Disclosing diagnosis
Dr. Rob Tarzwell:There’s probably no specific age before which you can start discussing elements of mental illness with your son. It’s probably more like progressively more sophisticated conversations over time. Genetic risk will make more sense once he’s had some high school biology.
Dr. Erin Michalak:Some people also recommend embedding these first (smaller) conversations with their children into routine daily events (like cooking a meal), rather than aiming for large disclosure conversations.
Ryan Tine:A guardian developed schizophrenia when I was around that age. At the time our social worker showed me some videos aimed at teaching kids about mental health. I watched 1 on schizophrenia & 1 on bipolar disorder, as my father also has BD. It was a good foundation for me to learn.I have BD 2. Diagnosed in my early 20s but showed some mild signs earlier. I don’t think genetics alone from my father would trigger it, but there can be other factors that can contribute to it being triggered. Receiving the foundation so young helped prepare me, in hindsight.
Stéphanie Fontaine:I discussed being bipolar gradually with my son. I started by grasping any opportunity to talk about it, including #BellLetsTalk. At age 5, we watched a documentary on bipolar disorder and I told him about my diagnosis. And later, genetics. He became a great supporter.
Dr. Erin Michalak:There are some tips on disclosure considerations in work/school settings in our Bipolar Wellness Centre.
Dr. Stéphanie Fontaine:Dr. Erin Michalak:Great question. There are some resources that might be useful here: bdwellness.com/Support-Tools/Resource-By-Area/Relationships … – see the one from NAMI – but lets open this Q out to the wider CREST.BD community – what disclosure techniques work well for you?
Suicide
Dr. Erin Michalak:I’d recommend starting by having a look at the diverse resources offered through this directory which was curated by unsuicide.org, which includes metanoia.org/suicide. Finding someone to talk to through groups such as 7 Cups (7cups.com) might also be helpful.
Pregnancy
Dr. Erin Michalak:Disturbingly, we also know from research that some people with BD decide *not* to have children on the basis of their perceptions of risk information. But they don’t always have the right evidence to make fully informed decisions
Stéphanie Fontanie:Dr. Rob Tarzwell
Other conditions and bipolar disorder
Dr. Rob Tarzwell:Both BD and Sz are chronic conditions, meaning there is no cure. Both also have a wide spectrum of medical, psychological and social treatments. In schizophrenia, we haven’t yet fully figured out how to treat low motivation/pleasure and cognitive symptoms.
Ryan Tine:Depends on the severity/type of each disorder & the supports in place for the person with it. I’ve had clients with each & seen them recover when surrounded by a great team, social supports, goals & basic needs. People w/o these supports are at far greater risk of not recovering.
Dr. Rob Tarzwell:Great question! When I began practice in 2006, lots of psychiatrists still simply refused to believe these could co-occur. A small group said, “But our patients do better once we stabilize mood by adding a bit of stimulant for residual distractibility.”Over time, the field has come to realize that we should be far more vigilant. However, too much of a good thing is possible. There may be a tendency for “ADHD” to be diagnosed when the issue is mood. https://europepmc.org/abstract/med/21318193 …
Educating Others
Dr. Erin Michalak:Yes we do! Don’t start out with the “misery statistics” – they are easy enough to find by just googling BD, and they not fully accurate/representative. The youth with BD engaged in our Bipolar Youth Action Project had this to share.
Dr. Rob Tarzwell:Letting youth know what mood disorders are, that they’re common, and what the symptoms are is an excellent thing. Some may worry, but you can unpack those worries. You may also hit a bullseye with the depressed kid in the back too ashamed to tell anyone.
Stéphanie Fontaine:I was touched by this girl’s reaction to genetics: “If I become bipolar and I become like my mother, well, everything is gonna be alright.” Maybe the answer to your question is not about statistics, but about your relationship and their self-esteem.Teenagers are smart. When I was teaching, some read about my bipolar diagnosis in a magazine. Gossip/stigma proliferated until I openly talked in class (so stressed out). Before I met a 2nd group, the word had spread in the school and the stigma was gone.
Our next Q&A session will be a Reddit AMA! Join us on World Bipolar Day, March 30th, on r/AMA. Or, check out last year’s AMA here.
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