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Resilency in our Learnings from the Bipolar Youth Action Project’s Forum 1

In the first event of its kind, 21 youth participants aged 16 to 25 from Vancouver Island came together on a summer day to focus on, and share strategies for, living well and with resilience. All the youth participants shared a diagnosis of bipolar disorder (BD), as do all 7 members of our Youth Action Group, which was instrumental in planning and facilitating the forum.

In reflecting on the forum, the term “resilience” came to mind because of its powerful meaning. In the field of psychology it refers to an individual’s capacity to adapt, to thrive and fulfill potential despite or perhaps even because of life stressors and catastrophes[i]. Implicit is the recognition that amidst the most severe challenges life may bring, individuals and their communities can, and do, adapt and regain health and wellbeing.

Experience of mental and emotional crisis and imbalance is varied and subjective, and as old as time itself, but positive coping or adaptation strategies can greatly improve the lives of people who live with mental illness, including BD. Pharmacological treatment of symptoms, alone, without development of strategies for adapting to and managing stress, is often insufficient. Modern psychiatry is often concerned with medical solutions to acute or severe situations and thus, can be slower to provide psycho-educational support. Efforts to alleviate mental illness with a proactive and preventative approach are gaining ground, however, and this is where the Bipolar Youth Action Project can make a real impact.

The researchers leading the Bipolar Youth Action Project have, from the outset, focused on learning about resilience, and on learning from those with lived experience. At the forum, members of our 7-member Youth Action Group spoke about their personal experiences of battling with and overcoming the challenges of living with BD. In groups, our 21 youth participants were asked what actions – or ‘self-management strategies’ – they take to stay healthy. As the youth drew on their experience, and built on each other’s responses, a collective wisdom emerged along themes such as the importance of key relationships, essential lifestyle practices, and commitment to treatment.

The sense of hope and courage among participants was palpable. As a Youth Action Group member and forum facilitator, I saw that attitudes of resilience grow when shared. Using the knowledge we generated, our team members are ready to show that the strategies can be learned as well.

We’ll be doing this at our second forum on Sunday, November 15th in Victoria, BC, so get in touch if you’d like to join us.

Thank you for reading!

Footnote [i] http://www.wilderdom.com/psychology/resilience/PsychologicalResilience.html

By: Alan, BYAP Member and forum workshop facilitator

 

Why is the Bipolar Youth Action Project Cool? Author, Melissa – BYAP Youth Lead

The VERY rough idea behind the Bipolar Youth Action Project (BYAP) is that it is a research study that addresses, well…

Bipolar disorder.​

But for youth.

Obviously.

So what makes this project cool? It’s that it’s actually asking youth with bipolar disorder how they manage their disorder themselves!

Why is this so important? Well, because it’s an opportunity for us, youth with bipolar disorder, to talk about what WE THINK works!

As I see it, mental health solutions are usually “top-down.”

Picture it like this: essentially, psychiatrists are at the “top,” looking “down.” It’s kind of like they’re up in a big tower, where they can observe many people at once. With their bird’s-eye view, they would be able to see, say, if a bunch of people below are walking in circles. On the other hand, at the “bottom,” an individual person may not be able to realize they’re walking in circles, because they don’t see things from the vantage point of a person above.

In the real world, not crazy circle-walking land, what this means is: psychiatrists observe patients, then determine what a group of patients has in common that makes them “bipolar.” Then, they write out all of these symptoms in a big book (The Diagnostic and Statistical Manual of Mental Disorders, or DSM, which released its 5th edition in 2013). Then other psychiatrists can look at the DSM-V and tell an individual patient that they have bipolar disorder by referring to the list of symptoms.

Now, this is all good! Psychiatrists are experts. It’s not like they just pulled this stuff out of nowhere – attempts to classify mental disorders date back to the mid-1800's, and the first DSM was released back in 1952, after a whole bunch of WWII veterans came home and the doctors were like, “Oh, wow, everyone has Post-Traumatic Stress Disorder. We should probably deal with this." (Well, not exactly, since PTSD wasn’t a thing yet. But yeah.)

Since that’s happened, research into mental disorders has been pretty constant. A new edition of the DSM is released roughly every 20 years, with revisions released in between. They’re pretty much always been reviewed and more research is being always done.

Okay, so, sounds pretty good. So is there any issue with this?

Well… what about the “bottom-up?”

Psychiatrists and researchers do have the benefit of seeing things from the “top.” They can see that, over large groups of people, certain symptoms characterize bipolar disorder, and certain treatments – such as medications, cognitive behavioural therapy, or mindfulness – seem to work. But because they’re not at the bottom, they don’t have the unique, individual experience of a person with bipolar disorder – and so their solutions can’t reflect that.

We, the people on the ground, understand what it’s like to actually LIVE day-to-day with the challenges posed by bipolar disorder. Because of this, we can come to solutions that work for us, as individuals. And hey, maybe if the solution works for an individual, it can work for other people with the same challenge!

This is the bottom-up approach, and it’s exactly what the Bipolar Youth Action Project is about. The BYAP is about asking youth who face the daily challenges of bipolar disorder what works for US. It’s an opportunity for us to finally have a voice in the conversation about managing mental health.

After all, we’re the ones who live with it!

The First Bipolar Youth Action Project Forum by Anna Graham, Youth Peer Researcher

After careful planning and organization, the day for the first Bipolar Youth Action Project finally arrived. We set out to make our mark in the world of bipolar disorder (BD) research and we were ready to make it happen. Our goal was to find out what helped youth with BD to live meaningful and healthy lives: what skills they employed, and what tools they used to keep themselves balanced and well while living with the disorder. After a day filled with fun, new insights, and a plethora of information, we have gathered invaluable data that will help shed light on our cause.

The day was ready to begin with all the food, tables, and chairs set up in our space. Our 21 forum participants, all youth who live with BD, came through the doors, registering and acquainting themselves with each other and with the members of the BYAP. As everyone got settled introductions were made and the tone was set for the day — we were in for a lot of fun and information gathering. Throughout the day we had Erin Stewart Elliott, our graphic facilitator, creating images to represent what we were accomplishing that day. Erin’s graphic record outlined our journey as it developed, creating a unique visual reminder of what we had done. She began her process at the beginning of the forum and we watched as her drawings and words captured the feel and energy of the information that was being presented that day.

The participants then formed into groups in order to prepare for the focus group portion of the forum. The participants were organized into 4 groups with a facilitator asking questions and managing the flow of the conversation and a co-facilitator supporting and taking notes. This was the crucial portion of the forum, the time to gather data that we will organize and then present during our next forum. In the focus groups, we discussed methods for wellness and achieving balance and stability. It was an honest and unique view of how youth stay well while living with BD. After the focus groups were finished we broke for lunch and enjoyed delicious sandwiches and salads!

Then to finish off the day we had our workshops. The workshops were run by the BYAP members and covered topics such as mindfulness and how to live successfully and happily while not letting your disorder define who you are. The workshops were great, with lots of participation and interest. Laura walked us through a mindfulness segment in which we used a piece of chocolate to find ourselves in a state of calm and mindfulness; it was very effective and well received by the participants! Michelle and Alan also did a mindfulness exercise that taught us how to live within the present moment.

Overall the day was fantastic, and was successful in achieving its goal of finding new information to help in understanding how youth live well with bipolar disorder. Now we prepare for Forum 2, where we’ll share the information we collected in Forum 1! It will be an amazing way for people to see what self-management strategies are employed by youth and how they manage living with BD and staying well. I feel so grateful for being able to participate in such a meaningful project and can't wait for the next installment to get underway! 

Laying the Groundwork – Klara Woldenga, Bipolar Youth Action Project Co-lead

In our research meeting we laid the ground work for what the research study is about. We discussed the goals of the research project and the possible conflicts we could encounter along the way. We got to know each other better through group exercises which involved writing down goals and obstacles on post-it notes which were then posted on a large painting of a boat to create a metaphor for the research as a journey on a water vessel.

A Safe and Open Space

We also discussed the principles of ethics and what we can and cannot say outside of the group. What I thought was the most important was to realize that we were in a safe space, a space open to discussion about bipolar disorder. It made me feel comfortable being amongst people that all had the same diagnosis as me. In our group there are lots of different personality types, which reminded me that people with the same diagnosis aren’t necessarily the same person. We also spent time mingling with each other during lunch, which was positive; it allowed me to interact with the members of the group in a casual setting.

The Pros and the Cons

Over all, the entire research meeting went well. The strong pros of it were that it laid the ground work of the project as well as set goals for all of us to keep in mind. We were also able to spend more time with each other and get to know everyone better. The cons were that the meeting was much too long; I was barely able to pay attention and sit still by the end of it. For me, I don’t do well with passive learning; although being able to be on my feet as a Lead and a facilitator kept me focused enough to stay interested in the work.

Klara Woldenga

Bipolar Youth Action Project: Starting Our Journey – Co-lead, Anna Graham

After meeting for dinner at our first group outing, it was time to take the plunge into a full day of training. We enjoyed learning the ins and outs of working as a team led by Eugenia from Mind Your Mind along with Klara and myself, the Lead Youth Researchers on the project. This was a fun and positive experience as we're working with an excellent group of people who are all eager to begin contributing to this project.

The Big Day

The day was segmented into presentations for the whole group, and lots of fantastic small group work. A great way to get everyone engaged and get to know each other better. One exercise that really helped create vision for the project was using a poster of a boat with water and logs, and filling it with our hopes, fears and ideas for the future of the project. It was an activity that allowed open communication and honest feedback as a way to clearly show the intentions everyone had and to paint a picture of what things will look like in the coming months. In the boat we saw what we'd be bringing to the project, our individual skills and ideas that would create the fuel to push us forward. Many people shared that they were looking forward to bringing forth their own personal experiences, and that sharing their stories would be a valuable way for them to contribute.

We also spent time looking at past projects, for example, musical presentations and informational sessions as a way to share insight into living with bipolar disorder. These past projects were shown to us to help us visualize the path our project might take, and it was exciting to see all of the possibilities that were offered to us.

Closing Thoughts

Our journey so far has been an exciting leap into opening a dialogue with like-minded people about the trials and tribulations of living with bipolar disorder. We have an excellent group that is focused and motivated to create change and tackle stigma and it is going to be amazing to be a part of as we grow, learn and pursue our vision.

Thank you to the Vancouver Foundation for their generous support.

By: Anna

The Bipolar Youth Action Project – Pilot Summary

Yesterday, five youth and I took to the XrayLima Co. boardroom in Victoria, BC, sat around a table and dialed in psychologist and researcher Erin Michalak from CREST.BD.  There were several questions that Erin and I had for the group and as we design  our ‘Bipolar Youth Action Project’. It proved invaluable to partake in conversations with youth with bipolar disorder.  We began with exploring how they stay well in the first place.  There were an array of strategies described – two big topics of discussion were exercise and meaningful engagement in activities.  A variety of kinds of exercise were described, from riding a bike through downtown Victoria or strolling around Thetis Lake.  The youth we spoke to also engaged in a diverse array of activities: work, challenging studies, or doing anything constructive to help maintain positivity  and balance. 

Laughs were shared and the creative juices started boiling when asked “how should we communicate all of this important information on staying well with other youth with bipolar disorder?”  The group had some great ideas around social media. Facebook of course is popular and powerful, and was seen as a great way to get out the word that ‘youth ought to be talking about their mental health.’  The group explored the possibility of communicating this same message through various channels, such as a school assembly presentation or YouTube Video.  Imagine being able to showcase bipolar disorder by getting a glimpse of the life of someone who actually lives and breathes the illness and envision sharing the thoughts and words of the people who know it well.

The group had some very strong opinions on the importance of doing such a project, which they thought could be empowering and helpful to their own wellness, while at the same time providing education to others.  Getting together on a Sunday afternoon a few days before school starts really made this group’s dedication apparent and the session proved to be fruitful and rewarding.  The youth even recognized that while such work could prove stressful, with the right supports (including our great research team), they were confident they would be successful in their endeavours.  I have never been touched by such enthusiasm and passion; we hope that others will also see the potential this research has for making an immense and long-lasting impact.  

Comments from Youth:

"The first meeting of the project made me feel quite optimistic about what us, as youth with bipolar disorder are able to accomplish in reaching out to our peers and furthering the elimination of mental health stigma in our society." Lara 21. 

"I feel that the session held the other day was a prime example of how youth of a very diverse group can come together. We talked about how we could get such an important subject of our lives into the hearts of others. I'm very proud to be one if the leaders of this research team."  Steven, 22.

"I learned a lot about how other people deal with bipolar and it made me feel less alone, I really liked exploring the idea of using social media as a way of raising awareness." Christine, 16.

 "Yesterday's research group was an eye opener to the fact that we are not alone. We brainstormed ideas on how to keep happy, and safe and it brought us all together with the common desire of wanting to live a long happy life, regardless of our mental illness."  Sascha, 16.

"Although I was quieter than the rest of the group I felt excited about the possibilities that this project could offer.  I could help myself tremendously and most of all enrich the lives of others." Jennifer, 20.

 

For a more in-depth summary of findings visit the following link

Pictures used with permission of participants.  Real names of participants were not used for this blog.

Bipolar Youth Action Project

We all say how important youth are, how vital their participation is, and see value in their contribution.  In light of this, the Bipolar Disorder Society of BCs (BDSBC) – Bipolar Babe project (www.bipolarbabe.com) recognizes that we all need to be paying more attention to younger generations affected by bipolar disorder. 

The research team at CREST.BD (crestbd.ca) and BDSBC have joined forces to develop a grant proposal called the BIPOLAR YOUTH ACTION PROJECT submitted to the Vancouver Foundation.  The project will engage youth who live with bipolar in order to develop research skills and study alongside their peers.

What does this mean?  We plan to first launch a pilot project for the grant and we have invited six bright youth with bipolar disorder to participate in a 1.5 hour session to brainstorm ideas on how they and others can stay well while living with bipolar disorder. 

They may pose questions such as:

 – what techniques do you use to stay well with BD?

– do you think any of these techniques are particularly useful for people in your age range?

– do youth face particular problems in terms of staying well with BD compared to adults?

– what's the best way to share information about how to stay well with BD with other youth with BD?

As someone who has struggled with bipolar, I realize how important such a project is.  I have experienced serious bouts of psychosis, mania and depression and my hope in life is not to have others suffer as I have. We all need to find ways to stay well, especially our youth that live with bipolar disorder.    

There are additional benefits to creating a youth based project such as the Bipolar Youth Action Project: not only do youth gain the opportunity to become researchers themselves, but relationships will be formed and peer support circles created along the way, up and down Vancouver Island.  The youth, while brainstorming answers regarding wellness from their own research, will also be working in a supportive and motivating environment.

The space that CREST BD and BDSBC are planning to create will allow youth to express their research findings and have them apply their knowledge through multiple avenues, according to their needs and the needs of their peers.  The goal for our two organizations is to create a unique and valuable experience and encourage the wellness of youth living with bipolar disorder. 

It’s a significant win for everyone and thank you to the wonderful youth who have agreed to participate in our pilot project component of the project this August 2013, you are making bipolar youth history!

www.bipolarbabe.com and www.crestbd.ca