As Mayo Clinic Connect celebrates its 10th anniversary, Rosemary Huckleberry, better known as @rosemarya, reflects on the evolution of the past 10 years—Mayo Clinic Connect’s and her own from member to mentor.
Here I am, in the photo above, just one year after my transplant, sitting with the Mayo brothers on the steps outside the Gonda Building at Mayo Clinic, Rochester.
In 2009 I received a liver and kidney transplant at Mayo Clinic in Rochester. After returning home post recovery, I wanted to learn more about living life as an organ transplant recipient. That’s when I discovered Mayo Clinic Connect.
Because I trusted the Mayo Clinic name, I felt comfortable joining an online social network for the first time. I thought by becoming a member of Mayo Clinic Connect, I could meet another transplant recipient—someone like me with whom I could share and learn. I was eager to know more.
One day someone asked a question I knew I could answer. We had the same health condition! To my surprise, I was looking for support for myself, and instead, I found people asking questions about many of the things I had already experienced. It felt natural for me to talk about parts of my own health journey with liver failure and organ transplant to support and encourage others. I like to think that by sharing my story, patients and loved ones find comfort in realizing they are not alone and that there is always hope.
Back in 2011, Mayo Clinic Connect interactions were more limited. A member asked something, another answered, maybe. It led to short, one-to-one exchanges between two or few people. At the time, I thought it was terrific, learning along with others. Looking back, I can see that there wasn’t the sense of community there is today. Moderators, mentors, and active members make it a priority to welcome new members, introduce them to other members, share knowledge, and encourage connections and conversations. It’s much more like gathering together around the coffee table and benefitting from the wisdom and experiences of many.
I’ve been a volunteer mentor since the mentor program was introduced in 2016. When invited to become a mentor, it was natural to say yes. I saw this as a way to support and uplift others like myself. Through group conversations, I like to help people learn more about their condition, ask questions, and be more prepared for talking with their medical team.
The most rewarding part of being a mentor is the ability to touch others. I can extend my hand and send a gentle virtual squeeze to someone hundreds of miles away. I like that. One of my biggest joys is when a member shares that they have received a successful organ transplant.
In 2016, I started a discussion called Living Life after Your Transplant, where I invited members to share their tips for everyday practical living with a transplant. The Mayo Clinic transplant staff synthesized the knowledge and advice shared in that conversation to create a blog post and a video (click the link to see the discussion, the blog, and the video we made). The video was shared with patients via the Mayo Clinic app and was also uploaded to Mayo’s YouTube. I could never have imagined that Mayo staff would have used information from a patient discussion as they did!
A highlight for me as a long time member and mentor was being interviewed on Mayo Clinic Radio about the value of the online patient community. What a thrill to be acknowledged and to represent the community.
Member Spotlights are a fun way to learn about members. I stepped out of my comfort zone and volunteered to conduct member interviews along with fellow Spotlight team mentors @hopeful33250 and @johnbishop. I enjoy helping members tell their stories.
Mayo Clinic Connect has had a bright past and it will continue to have a bright future. I would like to see continued emphasis on mentors and members guiding and encouraging members to be advocates for themselves. I hope Connect is a resource for medical professionals to learn what patients say they need, and use these insights to help improve their relationships with patients for better care.
Above all, I would like Mayo Clinic Connect members to know that, even when they may not think they express themselves very well, what they have to say is important.