Sucdi’s Story: A Journey from Patient to Advocate
A special feature for Heart Health Month
For this year’s Heart Health Month, we are spotlighting our new Institute Advisory Board member, Ms. Sucdi Barre, to share her story of resilience and hope. Sucdi and I recently met virtually to discuss her unique lived experience as a patient.
Approximately four years ago, Sucdi was pregnant with her first child. She was healthy and considered at low risk for complications. Although her pregnancy was uneventful, she suddenly became a new mother facing unexpected, life-changing events following the birth of her son. Sucdi was diagnosed with a Spontaneous Coronary Artery Dissection (SCAD) which resulted in her suffering multiple heart attacks, transient ischemic attacks (i.e., “mini” strokes) and requiring open-heart surgeries. Since that time, she has recovered sufficiently to return to work, raise her child and volunteer her time through advocacy. It is an inspiring story of resilience and I hope a synopsis of our conversation will provide readers with a glimpse of how her unique perspective led her to becoming a passionate advocate in her community and on our Institute Advisory Board (IAB).
For many years, Sucdi has worked for non-profit organizations caring for newcomers to Canada, especially those from visible minority communities. She regularly attends medical visits with clients to help interpret or translate important information between health practitioners and her clients. Sometimes she acts as a support system for families whose loved ones are preparing for surgery, significant health treatments or struggling with the next steps in their recovery. Her current role as the Co-Director of the Alberta Somali Community Centre (ASCC) continues her dedication to the empowerment and full integration of newcomers.
What did you learn from your experiences navigating the healthcare system?
What I learned from the beginning is that women experience heart attacks differently than men. From my CPR training and general knowledge, I thought I was supposed to feel constrained, I would not be able to breathe, there would be pain in my chest and I would hunch over. My experience was completely different from my previous understanding of heart attack symptoms.
Secondly, I learned that here in Canada, we have great facilities and capacity for world-class care. We do not self promote or advertise enough and sometimes we are overshadowed by other institutions or countries. It was gratifying to know that I was in amazing hands and had care from some of the best doctors in the field. I was so proud to be Canadian and to be in a city where these resources exist and I can access them.
What unique perspectives do you have that have shaped and informed your patient advocacy work?
Once I experienced the health care system myself as a recipient of care, I realized that there is a real need for patient advocacy. Even for those of us who can communicate our needs with ease, there may come a time where your condition deteriorates to a point where you are unable to speak and your family is unable to step in for you. When you cannot have visitors in hospital, as is the case right now with the COVID-19 pandemic, patient advocacy is needed more than ever.
I understand that patient advocacy was not an intentional choice for you, but was an evolution over time.
During my eight months of recovery in hospital, when pain was sufficiently managed and I felt well enough, I visited with other patients on the wards. When something dramatic happens to you, it does not need to change every aspect of your life. I am a social person and even though I was in a different environment, there were still people that I could connect with and help. These visits were emotionally nourishing for me. I wanted to help people to focus on things other than the fact that they were in hospital, and were suffering from medical conditions outside of their control.
You officially joined us in December as our newest Institute Advisory Board member. Why do you feel it is important to have people with lived experience on IABs?
Although health research is enjoyable to read about, it is not within my practice and it is not in my professional expertise. Being a member of the IAB allows me to learn about the research and projects being funded by CIHR. The IAB gives me a platform to share my experiences as a resource in order for the patient perspective to be better understood and reflected in Institute activities.
Being on the IAB is beneficial because of one of the situations that happened to me while I was in hospital. My doctors tried to put me on the heart transplant list but there were not enough people from my culture and ethnicity listed as organ donors. I think there may be misconception where people fear receiving poor care if they are listed as a donor – they may feel like doctors will not try to save them. I am part of a population group who is a bit of an outlier for available donations. I would like to help change that perception.
You work with newcomers to Canada. We spoke briefly earlier about language barriers that can exist. What are some of the other challenges in the Canadian health care system for your clients?
There are many challenges and complex cases. There are people who come to Canada in order to escape war-torn countries, women who were child brides, people who did not have access to diabetes or blood pressure treatments. Those situations come with a lot of emotional baggage. I think we need more mental health supports in the healthcare system for these individuals, especially if they are also now dealing with new trauma of a sudden, permanent health diagnosis.
My discussion with Sucdi illustrates her resilience, optimism and positive nature. She has taken her experience, the challenges that come with it and has turned this in to a message of hope, compassion and courage for others who may be experiencing similar life changing health transitions. We are truly grateful Sucdi chose to join our IAB as an inspirational voice for patients within our community. I hope her message provides readers with inspiration, as we continue to face the many challenges of the COVID-19 pandemic.
Dr. Brian H. Rowe
Scientific Director, CIHR Institute of Circulatory and Respiratory Health
Professor, University of Alberta
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