‘My Story, My Way’
SHAWNA is very grateful for the meaningful sharing, honesty, strength and joy that came out of the digital storytelling project. Over the course of many working groups, workshops, one-on-one meetings and qualitative interviews, seven community experts as part of the “My Story, My Way” digital storytelling project, created emotionally impactful, deeply personal stories about how they have accessed healthcare.
“My Story, My Way” is an Arts-based, participatory project exploring the experiences of women and gender diverse community experts living with HIV in Metro Vancouver in accessing health care, drawing on and guided by a trauma- and violence-informed framework. Digital storytelling in this project has been conceptualized as a way of telling personal stories that combines voice, images, video, and music in short (3-5 minute) videos that can be shared online. Through capturing and sharing community experts’ stories, we hope to better understand experiences of trauma, resilience, and support in healthcare to shape and advocate for more and better trauma- and violence-informed practice in HIV treatment and care (and all health services).
Please note
The following stories are powerful narratives of courage, resilience and overcoming obstacles.
Watching these stories can have unexpected emotional impact on viewers.
We recommend viewing the stories in order and reading the summaries before watching the videos as they serve as a content warning. Please take a moment to check in with yourself between videos; the following grounding exercise can be a useful tool in regulating unwanted emotional responses.
Grounding exercise
List in your mind and count on your fingers:
5 things you can see
4 things you can feel
3 things you can hear
2 things you can smell
1 thing you can taste
Breathe in normally and breathe out as slowly as possible as if you are breathing through a straw.
The purpose of this exercise is to ground you in the current moment when you are feeling triggered. Checking in with your senses in the moment reminds your body that you are safe in your current environment and the counting distracts your emotional mind and helps to bring your thinking mind back into focus.
Exercise adapted from: Schwarz, R. (2002). Tools for transforming trauma. Routledge. [Link]
Crisis support
If you’re experiencing a mental health crisis and need immediate support, please call 310-6789 or visit the Crisis Centre website here. If you’re having thoughts of suicide, please call or text 9-8-8.
Introduction to ‘My Story, My Way’
Where is the trauma-informed care?
Description: In this story, a woman struggles with getting her antiretroviral therapy medication at a moment when she needs it most. Due to her specialist’s concerns about her kidneys, she is prescribed a new cocktail that has side effects on her mental health. When she takes a break from the medication, she has a HIV viral load rebound and is unable to access care at her clinic. The pharmacist is dismissive with her concerns and her prescription is delayed. She is so disappointed with the care that she received from the clinic she has been a patient of for over 20 years that she wishes to receive care elsewhere.
Life
Description: In this story, a woman speaks to how mental health struggles interrupted the career and family life she had built for herself. She describes the traumatic events in her life that led to her living with HIV in Vancouver’s Downtown Eastside. She recounts how she stopped taking her HIV medication because the medication made her sick and unable to keep her methadone down. She describes how her doctor ignores her concerns about her leg swelling and her kidneys and she subsequently ends up in a coma for 10 days due to kidney failure.
My sad moment
Description: In this story, a woman describes how, when she was new to Canada, she found it difficult to access safe, supportive reproductive health care and health care providers during a pregnancy (speaks of abortion). She also discusses developing lipodystrophy when her doctor did not listen to her concerns about medication side affects.
Far from help
Description: In this story, a person describes their experience being unhoused, newly diagnosed with HIV, and pregnant. They recount how, at their HIV clinic, they were heavily pursued by researchers who wanted to include them in a research study to increase the representation of participants who were Indigenous. They speak to how this experience resulted in their avoidance of the clinic and that they ultimately did not receive the support and medical care that they needed.
Homeless at this age
Description: In this story, a woman speaks about facing stigma and discrimination while living unhoused with HIV. The woman talks about the unsanitary living conditions in the shelters and how difficult it is to have a healthy life without a home. She talks about her mistreatment at her clinic and how she feels neglected by her doctor.
I was sick
Description: In this story, a newcomer to Canada recounts how she was involuntarily hospitalised for suicidality due to a misunderstanding because of language barriers and discrimination. She expresses the impact that this experience had on her mental health.
Chrysalis
Description: In this story, a woman tells a story about how her Peer Navigator saved her life by taking her to the hospital. She recounts how her time in the hospital gave her the opportunity to reflect and attend support groups. She subsequently made the decision to stop using criminalized substances and she shares how her self-esteem and life have improved from the experience.
‘My Story, My Way’ Conclusion
Description: After completing the individual digital stories, SHAWNA hosted a screening for the community experts who took part in the project. This video outlines recommendations made by the community experts based on their discussion post-screening.