Empowered Management: The Power of Lived Experience in Pain Management and Research

Tuesday, 23rd November 2021
2:00pm3:00pm EST

Local Time: to

About the Session

“The key theme of our presentation is to highlight that living with pain does not mean we our powerless but in fact, we can shift our thoughts, actions and behaviors to live an empowered life with pain. The presentation will be divided into three parts. First, I will take the audience through my lived experience with pain and show how I came to realize how much power I have when it comes to managing my pain. Here, I will discuss the origin of my pain due to a trauma, the journey of living with multiple pain disorders, and the path I followed as I figured out how to navigate the healthcare system. I initially felt lost and hopeless on this journey until I found a 6-week self-management program provided by the provincial government. This was the first time I learnt what it really means to live with pain and how I can structure my days and incorporate strategies to help manage my daily pain. Dealing with the healthcare system daily made me aware of how services for those living with pain need to drastically improve. This sparked a desire in me to find a silver lining in my pain as I began working in pain research at the Toronto Academic Pain Medicine Institute (TAPMI). At this point, I will share my journey to research and describe how TAPMI understands and emphasizes the importance of self-management and the biopsychosocial model to manage chronic pain.

For the second portion of the presentation, Nida (TAPMI’s Research Lead), will discuss a specific research study relating to chronic pelvic pain and self-management. In this study, we assessed the impact of a virtual self-guided online education program directed at those living with pelvic pain. We feel it is extremely important and necessary to raise awareness about chronic pelvic pain as well as shine a light on the need for better pain education for pelvic pain. This type of pain has an added layer of stigma due to its private nature, since many of us are told not discuss our pelvic area since childhood. This has resulted in people with pelvic pain feeling further isolated, hesitant to share and hopeless. Therefore, we want attendees to leave this presentation feeling empowered about how much the biopsychosocial model and pain education can impact a patient. Additionally, we want people to understand the prevalence of chronic pelvic pain, the shame that can come with this type of disease and how our Pelvic Empowered Management modules impacted our patient population. Since one of the conditions I live with is chronic pelvic pain, I will help discuss the findings from this study and relate it to my own lived experience. This will be the bridge between part one and two of the presentation.

In the third and final segment of our presentation, we will engage the audience in a discussion on chronic pain, pelvic pain and the importance and power of self-management.”

“To begin the presentation, we will ask the audience to identify which of the presenters they believe lives with chronic pain to showcase how invisible this disease is. We will then ask the audience who is a PWLE, a clinician, a researcher or a caregiver to gain a better sense of who is present with us. We will then move on to a slideshow of images related to my journey living with chronic pain, as I tell my story of how I developed this condition due to a catastrophic car accident. Nida will also be using presentation slides when describing the Pelvic Empowered research study.
Our third presenter, Cheryl, will be an animated character who will help guide the presentation with Nida and I. Cheryl will pop in and out of the presentation to ask the audience questions and emphasize certain points related to the presentation. Cheryl is the animated character we use in our Pelvic Empowered Management Program modules.
We will also be taking live polls and asking multiple choice questions to the audience via questions posed by Cheryl. We will be able to see the live responses to these questions which will aid in engaging the audience in discussion. Participants will be given less than 1 minute to answer each question posed by Cheryl so we can get a better understanding of our audience and facilitate discussion. For those who will review the recording of the presentation, they will be able to see the results of the polls while answering themselves.
Lastly, there will be time designated at the end of the presentation to take questions about my personal story and our research. Participants will be able to ask questions throughout the presentation by typing into the chat box.”

The Toronto Academic Pain Medicine Institute (TAPMI) is designed as a hub and spoke model that began in 2014. TAPMI acts as a central referral system for five chronic pain clinics in Toronto. These pain clinics treat a variety of pain disorders such as interventional pain management, pain and addiction recovery, neuropathic pain, widespread body pain, Ehlers Danes Syndrome and pelvic pain. In addition, TAPMI offers self-management education, physiotherapy and other educational programs through their site. TAPMI understands the importance of the biopsychosocial approach and provides services required by patients to understand how this approach can help manage their pain. TAPMI’s mission is to transform the lives of those living with chronic pain through collaboration and knowledge creation.
Unfortunately, Emeralda’s story is not unique nor are the feelings of isolation, loneliness and despair that she felt. The lack of awareness surrounding chronic pelvic pain and people’s need to hear a person’s journey living with pelvic pain is integral. By providing a platform for us to talk at UPLiFT, we can share not only a personal story but also identify ways in which TAPMI is working towards creating educational programs geared towards specific types of pain and not just a general pain educational program. While a general education program can be a great foundation, having targeted educational tools enables patients to become empowered, feel less alone and understand that there are ways to manage the relentless pain.

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Presented By

Dr. Nida Mustafa

Research Lead
Toronto Academic Pain Medicine Institute (TAPMI), Women's College Hospital (Canada)

Emeralda Burke

Toronto Academic Pain Medicine Institute (TAPMI), Women's College Hospital (Canada)