Providing a Safe and Functional Community for Cancer Survivors

Online communities are can be essential for people impacted by illness. For those directly affected, their families, and support systems, these communities can provide a much needed place to share experiences, to vent, and to learn about different symptoms, treatments, and the intricacies of navigating the healthcare system. For our guest, Amanda Petersen, Planet Cancer provided such a community as she fought breast cancer in her early twenties.

Amanda has since continued to be an active contributor and moderator in online spaces dedicated to providing a safe and functional community for cancer survivors. In this conversation, she talks about the role that Planet Cancer played in her life in addition to why she felt motivated to start participating in r/breastcancer. The community exists and is functional because of its people –– people like Amanda that help to moderate the space and people that are looking to connect with others and find support in their journeys.

Whether a moderator takes a break or community members sadly pass away or move on, the rules that they have created and the space that they’ve fostered will continue to provide a meaningful community for cancer survivors.

Amanda and Patrick also discuss:

  • Rules that are representative of the community they serve and protect
  • The emotional labor of managing a community of care
  • How Planet Cancer helped Amanda through her own journey with cancer

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If you enjoy our show, please know that it’s only possible with the generous support of our sponsor: Hivebrite, the community engagement platform.

Big Quotes

What makes a space for cancer survivors not functional? (12:27): “[After you have been in the] support community space for so long, there are certain things that you start IDing [that indicate] this is no longer a functional space for survivors. People flooding it when they’re concerned about having cancer, while totally legitimate, will drive away your survivors. People asking for donation requests will drive away your survivors. People asking for research requests will drive away your survivors.” –@amandarhiann

The important roles of active moderators in a subreddit (15:46): “Unless the moderators are paying attention, Reddit can be a very unsafe place for many reasons. With strong moderator teams, it can be a safe place of healing.” –@amandarhiann

Why r/breastcancer does not allow pre-diagnosis posts (19:13): “Don’t take advice about your health from someone at a grocery store, [and that also] applies to Reddit. [People] need to go to their doctor, and there are tons of pre-diagnosis resources out there that aren’t going to force people who are actively going through treatment to answer questions they shouldn’t have to answer.” –@amandarhiann

The emotional tax of research requests for cancer survivors (21:04): “[r/breastcancer] is a place for helping people navigate the complexities of breast cancer. It’s not a place to help other people do their jobs better. Sure, if you want to come and read [or] do text analysis on Reddit, go ahead, it’s all public, but don’t harm the people that we’re trying to help, even inadvertently.” –@amandarhiann

About Amanda Petersen

Amanda Petersen is the program manager for community operations at MURAL. Prior to working in community, Amanda spent ten years of her career helping people who used challenging behaviors to communicate complex needs. In tandem, she moderated and managed online support communities for young adults with cancer.

Transcript

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