For Juanna Ricketts, sharing the story of her struggle with mental illness was a part of her healing journey and a path to becoming involved in patient-oriented research. We sat down with Juanna to talk about overcoming fear to find her voice, the need to make mental health a part of daily conversations, and her many contributions to patient-oriented research.
How did you first start sharing your experience as a patient?
I’ll start from the beginning and hopefully that will keep me going. After having a meltdown in 2014, I got involved with the Canadian Mental Health Association Halifax-Dartmouth Branch. I’m so glad that I did because socializing helped my treatment. It made me feel special—and it’s how I met the United Way. The United Way asked me to share my story, as part of a kick-off campaign. Up until that point, I didn’t feel that I had a story. I didn’t know. I was nervous and scared, but I got up there and I told my story. After that, the United Way invited me speak at various businesses and universities throughout Halifax and Dartmouth. They sent the same person, Nicole, to pick me up and we formed a friendship. It didn’t even feel like I was going to a speaking engagement.
It’s hard to describe the journey that I took from where I was. When I was most ill, I lost my speech. I confused things. I was stuttering for at least six months. I was terrified to leave my Mum’s house—even with her I was terrified! And, there I was up there, speaking away. I was getting stronger through sharing my story.
From there you became involved in patient-oriented research?
Yes, it was around the same time, three years ago, that I first connected with the Maritime SPOR SUPPORT Unit and got involved in health research. I took the three-day [CIHR] Foundations in Patient-Oriented Research course. I’d never been involved in anything like this, and suddenly I’m at a table full of researchers and decision-makers. They’re talking this language that I have no idea what it means. Those acronyms!
Got to love the jargon. What kept you going in the beginning?
I wanted to learn about mental health. I wanted to learn more about my illness. Because when this happened to me, I didn’t really know what was going on. I just knew that my body was so sad. And, sometimes a situation would come up and I would give some input and then the others would stop and listen. I can share my experience—talk about a doctor’s visit, waiting for prescriptions or not being able to afford the prescription. In patient-oriented research, the patient's lived experience is given a voice at the table or perhaps from a caregiver perspective.
Can you give some examples of how you’re involved in patient-oriented research now?
I’m a member of the National Council of People with Lived Experience, an advisory group for the national Canadian Mental Health Association, and I’m on the Mental Health Commission of Canada committee for the National Registry of Suicide and its Prevention. I’m involved in two Pharmacy research projects. After a close family member was diagnosed with terminal cancer, I became involved in the BRIC NS incubator on End-of-Life care and started working with a research team led by Dr. Grace Warner. We’re now learning to deal with Alzheimer’s in the family – that will be my next focus. My feedback has been used greatly, respectfully, with consideration, value and thoughtfulness. Living it makes it real! Helping out makes it wonderful.
Clearly, family and community are big motivators for your involvement in research. Is this a part of what keep you so engaged?
I want people to have the best safe, care. People need to know the options for care. People don’t know and they don’t know who to ask. This is especially true for people who are vulnerable, marginalized people, or people living on low incomes. Coming from the privilege of a professional background, it’s a different world. We see but we don’t see the other world. We understand and we don’t understand. But when you have had to go into that other world—and it is another world—you see it in a different way. You know, I came from a professional and privileged life and ended up on income assistance. There were soup kitchens that I went to. I had never ever in my life experienced something like that before my illness. For myself, I am able to share those experiences so that I can talk to the people that can make changes. It gives me the motivation, even when I’m tired and busy.
Have you found that sharing your experience creates space for other stories, particularly where there is so much stigma around mental illness?
After I share my story, people come up to thank me—every single time—men, women, all ages and nationalities. Either they had experienced some type of depression or anxiety, or they knew somebody that had. They were so appreciative because these stories are often not told—even in my own family. We need to talk about mental health, talk about depression, talk about anxiety. We can talk about it like it’s an everyday conversation.
Lastly, what advice would you give to researchers on how to engage patients in research?
Reach out to the patients. Go to them, don't just post signs up. Find non-profits and places that cater to harder to reach groups—people with low income or seniors or persons with the disability—and reach out. Be friendly. Be respectful. Be kind and gentle. And, bring donuts!
Juanna Ricketts studied accounting at Sheridan College in Toronto, and combines her skill for financial management and her passion for patient advocacy in her work with the Empowerment Connection. In 2019, Senator Colin Deacon and Sara Napier, CEO United Way Halifax, presented Juanna with the Canada 150 Medal for her volunteer work with the Canadian Mental Health Association Halifax-Dartmouth Branch. In 2018, she received the Mental Health Foundation ‘Let’s Keep Talking’ Award for Outstanding Individual. She serves as a Patient Partner with the MSSU and BRIC-NS, and is involved in pharmacy, end-of-life, and Alzheimer’s’ research projects. Juanna is a member of the National Council of People with Lived Experience and volunteers with the Canadian Mental Health Association. She has shared her story with thousands, including through televised interviews with CTV and Global. When not dedicating herself to improving care for her family and community, Juanna enjoys walking and the occasional movie.