On Dress in Blue Day 2018, the Colorectal Cancer Alliance’s Blue Hope Nation online community reached 10,000 members. Blue Hope Nation is a private Facebook community for colorectal cancer patients, survivors, and caregivers. Members can ask questions, encourage one another, and share news. Jeannie Moore, a co-founder of the Alliance and contributor in Blue Hope Nation, answered some questions for us about the group:
Alliance: Wow, 10,000 members! Why do you think Blue Hope Nation attracts and keeps so many of its participants?
The only growing demographic of colorectal cancer patients is adults under 50, who are very comfortable with the computer and can find us with a simple Google search. They’re looking for support, they’re looking for information, and they’re looking for someone to talk to. We keep participants because it’s such an active board, with at least several dozen posts every day.
Alliance: When did Blue Hope Nation get started?
The Colorectal Cancer Alliance started this particular Facebook group several years ago, and it’s been growing ever since. Before that, we had communities on other platforms, but the Facebook page took off. Everyone is on Facebook!
Alliance: This is a private online community. Why do you screen participants?
We try to protect our members from spammers. People who are selling sunglasses don’t need to be on Blue Hope Nation. It’s also a closed group so people don’t have to worry about what they’re posting. A lot of people are concerned about what family, friends, or colleagues may think about this disease. This gives them freedom to share the good, the bad, and the ugly.
Alliance: Sometimes topics on Blue Hope Nation can become difficult. Do you think these difficult conversations are productive?
It is important because, as much as we want everyone to survive this disease and get through their treatments with ease, the truth is treatments are challenging and people do get frustrated, depressed, and scared. And yes, sadly, people do die. We need a safe place where we can talk about it. We need to be able to honor the patient journey and support one another.
Alliance: When you respond to a post on Blue Hope Nation, what do you keep in mind?
I always try to convey a warm, supportive voice. People say I’m too mushy, but I want to come across as caring and open. I think all of us have a very supportive way of interacting with each other. We recognize how vulnerable and scared a patient or caregiver can be.
Alliance: What is your colorectal cancer story?
In a nutshell, my mother was diagnosed stage IIIC rectal cancer on Mother’s Day 1998. At the time, we didn’t know what colorectal cancer was, but we found ACOR online community, which had a listserv dedicated to this disease. I learned a lot from the list owner, Marshall Kragen. He was so patient with me. When he passed away, myself and 40 other listserv participants created the Alliance. A brick-and-mortar organization dedicated to this disease was always Marshall’s dream.
Alliance: Blue Hope Nation is primarily an online community, of course, but what’s it like when you meet those Facebook avatars in-person, at our National Conference, an Undy, or elsewhere?
It’s wonderful. It’s the best part of the any event to meet people you’ve known for years online face-to-face.
Alliance: If someone reading this wants to join Blue Hope Nation, how can they do so?
The just click the “join” button on the page and answer a couple questions. Again, these questions help protect all participates and ensure a safe, welcoming community.
Alliance: Do you have any advice for new participants?
Some people like to lurk for a little bit to just read and learn. My advice is to jump right in, introduce yourself, and ask us any questions you have. You will be surrounded by support within minutes.