Providing a Safe and Functional Community for Cancer Survivors

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[00:00:04] Announcer: You’re listening to Community Signal, the podcast for online community professionals. Sponsored by Hivebrite, the community engagement platform. Tweet with @communitysignal as you listen. Here’s your host, Patrick O’Keefe.

[00:00:25] Patrick O’Keefe: Hello, and thank you for listening. On this episode, we’re joined by Amanda Petersen, the program manager for community operations at MURAL. Diagnosed at 21 with breast cancer, Amanda sought connection online and it eventually led her down this career path. We’re going to talk about that path, the breastcancer subreddit which Amanda helped reboot, and the types of rules a mature community puts in place when they understand who they exist to serve. I am sure this is clear, but just a warning, we will be discussing cancer and loss on this episode.

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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.

Amanda, welcome to the show.

[00:01:18] Amanda Petersen: Hi. Thanks for having me, Patrick. I’m excited to be here.

[00:01:21] Patrick O’Keefe: It’s my pleasure.

[00:01:30] Amanda Petersen: Long-time listener, first-time caller, I really wanted to say that.

[00:01:33] Patrick O’Keefe: [laughs] Thank you.

[00:01:34] Amanda Petersen: You don’t have to leave that in.

[00:01:35] Patrick O’Keefe: [laughter] I don’t see why we wouldn’t. When I asked you about how you got your start in community, you went to 2005 when you were diagnosed with breast cancer at age 21, and you found a community called Planet Cancer, and I’m going to quote you here, “We were just kids united by a common experience, alienated by the standard care for adults with cancer and we built a community that made it not better, but less lonely.” Talk about that.

[00:02:04] Amanda Petersen: Yes. When you’re diagnosed really young, they don’t know what to do with you. Depending on the type of cancer, you might be a 21-year-old being treated at a pediatric clinic, or you might be a 21-year-old treated at a clinic where most of the people that are there are older. You’re walking into clinics all the time to all these appointments and people are like, “Oh my God, you’re so young for this,” or, “Oh my God, I can’t even imagine being your age and going through this.”

That experience in and of itself when you’re the only person who’s there trying to go to college, trying to date. I was newly married, thinking about kids, that type of experience isn’t what the standard cancer patient probably really experiences. Typically when people face cancer, they’re a little older, they might have some kids, their kids might be grown, they might be retiring. They might not have to be worried about works or gaps in resumes or applying to grad school, or in my case in 2005, it was, am I going to have insurance or is this going to be a preexisting condition?

That experience, looking back on it this many years later, was so lonely because people call it out as, “Oh, you’re so young.” They have this talk track about like, “Oh, did you eat healthy? Oh, were you overweight? Oh, were you this, or were you that?” I was like, I was 21, “No.” None of those things were the case.

Not having people who know that feeling and know the, how am I going to go to work tomorrow? How am I going to finish college? How am I going to explain a two-year gap on my resume? How do I talk about my disabilities that I now have in a work environment? That isn’t an experience that you can walk into any cancer support group in the country or now Zoom into any cancer support group in the country and find because there just aren’t that many of us. I was the youngest kid diagnosed with breast cancer in that area of the state of Washington that year and, I think, for the previous three or four.

And I by no means was the youngest kid. I was an adult, but I was so young. Planet Cancer was a place where I didn’t have to worry about anybody being like, “Oh my God, you’re so young.” “Oh my God, my retirement accounts are never going to recover.” [chuckles] I was like, “Am I going to make it to retirement? I don’t know.” At that point, my survival statistics were very, very low for the type of cancer that I had because prior to my cohort, we didn’t have treatments. Planet Cancer was a place where I could say, “This really sucks. I’m really scared,” and other people could say that too.

The people who had started down the path before me were there to hold space for me and hold my hand and be like, “Yes.” I had my first and third chemotherapies paid for and my second and fourth were denied by preexisting conditions because this was back before Obamacare and the healthcare act. Somebody was like, “You just have to fight it. You just have to. They’re trying to not pay for it and your job not only is to manage going to the appointments and remembering all the stuff and making treatment choices with your physicians but it’s also to deal with the bullshit and deal with it.” Just having someone frame it that way as a job, like it’s part of your job, was really helpful.

If I’d walked to a group of people who were 65, 75 and they’re like, “Oh it’s your job to do this,” I would’ve been like, “Yeah, right. You guys don’t have anything else to do. I’m trying to graduate college.” It allowed us to create that space for each other. After my initial year of treatment, I was in treatment for another seven years, I just hung around because those people who had extended that space to me and that community to me and that connection to me, a lot of them had moved on. Some of them died. Cancer just really sucks and so staying in that space was important. Planet Cancer has a place in my heart forever. It also taught me my first lesson about how I’m not to migrate a community but it’s fine.

[00:06:43] Patrick O’Keefe: What happened with the migration since you brought it up?

[00:06:45] Amanda Petersen: It was freaking horrible. I do want to say something about the Planet Cancer experience. I was diagnosed in spring of 2005 and my childhood friend was diagnosed with lymphoma. She had had a tumor wrapped around her heart, I think, in December of 2004. When I was diagnosed she sent me a chemo fairy doll. It was this little bear with wings, some really trashy amazing books to keep me busy, some hats to keep my head warm. Then she was like, handwritten note, “check out plantcancer.org.” That’s how I found it. It wasn’t through social workers. It wasn’t through my doctors. It wasn’t through a Google search. It was literally my friend. She’s also how I found First Descents which is another amazing community for young survivors.

Migration, let’s talk about that. It was a total disaster from a user’s perspective. Do you remember what the open-source bulletin board software was way back when?

[00:07:50] Patrick O’Keefe: The most popular one would’ve been phpBB most likely but there were others.

[00:07:54] Amanda Petersen: It was like BB board.

[00:07:56] Patrick O’Keefe: bbPress which is from the WordPress folks. There was all sorts of open-source software that came out.

[00:08:02] Amanda Petersen: It was literally one of those old school ones, old school enough. We had a little like icon which was a world with a bandana on. That’s a really common cultural experience for people with cancer. We had a hot flame. It might have been a GIF that went on and you could tell when something had been talked on or not. The migration happened just as Facebook was getting larger. We were moved to a platform that was basically Facebook-like with a newsfeed and profiles. That move didn’t happen with the people who were on the boards. It was this decision that happened. The founder of Planet Cancer, her name is Heidi Schultz Adams. She was amazing. She really pioneered the work for young survivors. Pre her and pre Planet Cancer, we weren’t really a part of the conversation at all.

When the move happened, it shifted from a platform like a community forum platform to a more Facebook-style platform. It was the classic we weren’t really told what was happening. We were just told that the boards were closing down and that they were going to keep them around for a period of time and our dead friends were talking there to us still. We could go and look at them and see them there. It shifted to social media which social media really focuses on the individual and the profile of the person and less on the conversations. When that happened, it definitely made it harder for me to moderate because I couldn’t find anything and the structure was gone. It’s the first lesson I learned in change management and how if you have to make a change, how to bring your people all along with you so you’re not upending a community that was built.

[00:09:57] Patrick O’Keefe: Totally. I pulled up the Wayback Machine for planetcancer.org and found that it was phpBB was what the community was running in ’05, end of ’05, so I guess when you first would have maybe discovered that community, perhaps.

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You go a long way from Planet Cancer, discovering that community, to working at MURAL, and some spots in between. Another spot with a similar audience that I wanted to talk about was the breastcancer subreddit on Reddit, which is where you eventually moved over to and helped to improve. Before the show, you mentioned that you had helped to reboot it. I guess, just to set the table, what was your involvement there?

[00:11:14] Amanda Petersen: r/breastcancer is like any other subreddit. It was created by someone at some point with a vision for creating a community around breast cancer. By the time I was interacting with it, it was three, four years ago, I think, I went in and I was a looky-loo on Reddit for a very long time until I finally got irritated and signed up. I just wanted to be able to upvote things.

[00:11:41] Patrick O’Keefe: That’s the motivation we all want. We want people to be driven by irritation.

[00:11:43] Amanda Petersen: We all want to click the upvote, right?

[00:11:46] Patrick O’Keefe: Yes.

[00:11:46] Amanda Petersen: I was looking at it, and people would post and no one would answer, or one or two people would answer. People would post things like, “Hey, I might have cancer. What do I do?” Then the same time, somebody else might come in and say, “I have stage 3 cancer. I don’t know if my kids are going to see me live.” Somebody else might come in five or six days later and post, “I’ve got a research request. Calling on cancer survivors, come and tell us… do emotional labor for free so that we can study you more.” It was just crickets.

One of the things about cancer and being in the support community space for so long is, there are certain things that you start IDing as like, “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.

This is right when I started at my last job at Personify and I was working with all of my clients and I was looking at the subreddit being like, “I know there are young breast cancer survivors on Reddit.” You don’t have to be a woman to have breast cancer. Anybody that has mammary glands can get breast cancer, any age. The places that did provide support for young survivors specifically, most of them were on Facebook. I just was like, “What if there are people sitting there like I did at 3:00 AM in the morning before their chemotherapy and they don’t know where to go and they’re on Reddit? What if that’s a need?”

I was just like, “Okay. Just start replying.” I started replying. Over time the replies started picking up and more people started gathering. Then I started replying to other people’s replies, again, modeling that kind of behavior. The whole intent was to just create a space where people can talk to each other, and support each other, and give that little up arrow of, “Hey, I heard you.” The good, the bad, the ugly, I heard you. That started picking up.

Then I had to have brain surgery about three years ago. Not for cancer. I have a brain malformation. I then had to have a second brain surgery rapidly after. It was hard for me to do that labor because there’s a lot of, I don’t know, remembering a lot of experiences that I went through that if I’m not like talking to people, I don’t necessarily think about them all the time and I just couldn’t do it, so I stepped away from it. About a year later, I got this message from Litarider and she’s one of our other mods. She was like, “Hey, you’re the oldest mod on here who’s actually somewhat active on Reddit. We need help. People are talking and talking in the forums in the subreddit and we can’t do it on our own. We need assistance.”

How did I even become a moderator? I think I probably looked at the mod list and was like, “Hey people is anybody interested in moderating anymore?” I was added and started making some changes to the rules. I don’t really remember all of the changes or what the rules were. I wanted to go back and find them for our convo but I couldn’t. By the time I came back, there was stronger rules and we had a group of four moderators, myself including, who were there making sure that the Reddit was a safe place. Reddit, unless the moderators are paying attention, Reddit can be a very unsafe place for very many reasons. With strong moderator teams, it can be a safe place of healing where people can provide it.

Litarider reached out and then we start a little chat group between all of us and we put rules in place of engagement to really make the Reddit space safe for breast cancer survivors and patients. That is the entire purpose of that subreddit.

[00:16:20] Patrick O’Keefe: In this sense is a reboot, is that the moment this moderator says, “Hey I need help.” You’re like, “What can we do to fix this quiet that has taken the community, adjust our rules to make it more inviting?” Or how would you describe a reboot in the sense of a subreddit?

[00:16:35] Amanda Petersen: The reboot started three years ago when I just started replying to people.

[00:16:39] Patrick O’Keefe: Got you.

[00:16:40] Amanda Petersen: I think about community building as momentum and energy. The energy was pushing that ball down the hill and it’s starting to roll and then other people being like, “Woah, we should have a ball here. It should be rolling.” They were shoving at the same time.

The more formal moderating really happened when Litarider looked around and was like, “Where are my mods?” I was off being brain surgered or whatever that word is.

[00:17:11] Patrick O’Keefe: There was definitely more of a gradual thing. You saw a community that you felt needed some attention and then as a member, you said, “I care about this. I want to be there for people and then you started to be there for people. Then other people noticed including this moderator and was like, “Wow, we actually have more things going on now. We should take a look at our moderator list, our rule set, and how the community is set up to keep this momentum going.”

[00:17:39] Amanda Petersen: Litarider actually, I think, became a mod after I had gone. I think they came in and were like, “Woah, all these people are talking but all these people are doing stuff that they shouldn’t. Some of them aren’t and they’re making it an unsafe space,” and got the mod role assigned and then rallied us into refining the community and really creating the rules and structure.

[00:18:01] Patrick O’Keefe: As I read the rules for the breast cancer subreddit, they struck me as an interesting example of a mature community understanding what doesn’t work for them in areas where someone who is inexperienced might ask, “What’s the harm of that thing. It seemed like it could help.” There are a few in particular that I wanted to discuss. What I wanted to do is I’ll quote the rule and I’d love for you to tell me the context for why it exists and the difference it makes.

The first one, pre-diagnosis posts will be removed.

[00:18:34] Amanda Petersen: Yes. That is a firm and fast rule. Think about it this way. I’m 21 years old. Obviously, I have cancer. Totally bald. Stumbling around the grocery store because I still have to go to the grocery store because my husband’s working to pay my cancer bills. Somebody runs up to me and is like, “Hey do you have cancer? I’m really concerned about this lump on my breast. Do you have breast cancer?” The level of those types of inappropriate questions to survivors and patients especially if you actively look that way is incredibly stressful.

Also, secondly don’t take advice about your health from someone at a grocery store, applies to Reddit. These are people who 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. I could see that being a very weird rule if you didn’t have those experiences.

[00:19:36] Patrick O’Keefe: That makes a lot of sense. Next one. No research requests.

[00:19:42] Amanda Petersen: No research requests. We used to actually allow people to submit research requests. We put some structure around it and I was like, “Hey if you want to submit a research request, we need to know what organization you’re doing it for. We need to know that you’ve gone through the human subject review board. We need to know the scope of the research before we put it in front of our members,” because, again, it’s something that happens all the time. People are like, “Oh, they’re a survivor. I want to know more about what survivors think. I’ve got a survey that I want you to answer.”

If we let it, we would get five or six or seven or eight or nine research requests posted on a regular basis. The point of the subreddit is to take care of our survivors. It’s not to provide research subjects. I think about it as like, if I’m coming to a place where I need assistance, and everything that’s around is stuff asking me for my assistance, I wouldn’t come back. Why would I come back if somebody’s always asking me for this very specific help? I have answered so many of those surveys and so have the other moderators over and over and over again. This isn’t the place for it. That’s just really it.

This 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, fine. If you want to do text analysis on Reddit, go ahead, you can, it’s all public, but don’t harm the people that we’re trying to help, even inadvertently.

[00:21:30] Patrick O’Keefe: Yes, it makes a ton of sense. Even in communities where the subject matter is less sensitive, let’s say, like I have a martial arts community I’ve managed for 20 years, 21 odd years in May, and honestly, we’ve had probably 100 people or more just try to post research requests in the community. It’s okay. It’s not damaging or annoying in the same way that you describe, obviously, but still, there is some symmetry in the sense that these are people who come here to do this thing because they love this thing. They don’t necessarily come here to be subjected to requests because they love this thing.

It’s not to say that I haven’t approved some requests, but I always make people run it through me. When you’re getting six to seven a day or a week or whatever that is, honestly, it’s taxing in a really unnecessary way that isn’t why you exist. It makes a ton of sense to not fill the community up with, basically, a request to go share your experience somewhere else and fill it into a void that who knows if it ever comes out, what form it takes. It can be a very frustrating process.

[00:22:40] Amanda Petersen: Yes, and a lot of the research requests that we would end up getting, especially once we started vetting them, they’d be undergrad research requests. The surveys wouldn’t be well-thought-out, they wouldn’t be following best practice. They might not have had their human review board stuff done. It was on a case-by-case basis, but I had to step back. I got really depressed last year and stepped back from, I think, June until probably just recently. I came back and that rule changed, and I was like, I get it. I’m fiercely protective of the space and so are the other mods.

We do get called names about this, though, a fair amount in the moderator chat when people send this message because it’s a boundary. This one in– I don’t know if you’re going to ask about the no “breaking cancer treatment” stuff.

[00:23:29] Patrick O’Keefe: I wasn’t because that one, to me, seems like a good way to shut off misinformation.

[00:23:34] Amanda Petersen: Well, that’s the one that we get yelled at about the most, frankly, like, “You gatekeeping-

[00:23:40] Patrick O’Keefe: “So and sos.”

[00:23:41] Amanda Petersen: -names, names, names, names,” because we’re holding the space. That’s our whole job as moderators is holding the space.

[00:23:49] Patrick O’Keefe: I think it’s impossible for you to really know 100%, so it’s kind of an unfair question, but do you think that, let’s say, at least some of the people who do that, who get mad because you won’t allow them to post this breaking news story that who knows where they’re from or what they’re coming from, aren’t people who are facing the same challenge that community members are facing and are instead more interested in just, they’re the author of that post or it’s their website or, like, “This is going to help people.” It doesn’t matter, one piece of spam, it’s like, “It’s relevant. It’s going to help people.” Is it a lot of those folks?

[00:24:21] Amanda Petersen: That’s such a good question. Yes, I think the people that get mad tend to be people with skin in the game for whatever reason. It’s happened a couple of times, particularly companies that are doing cutting-edge research in different countries will post it and they’ll post it in different spammy ways or they’ll try to have you click a link and it takes you to their spammy site. They’ll say that they’re cutting-edge research, and it’s like, you have a test on one mouse. This isn’t the place for that. Cancer research is critical. Some survivors find comfort in reading about stuff that’s coming down the pipe.

I was quite literally probably am here today because of cancer research. The people that get really mad are either people, like I said, with skin in the game who have paid for that research and are really excited about it, or it’s people who are like, I just wanted to talk about breast cancer and this is r/breastcancer. Those people don’t usually get enough as mad once they understand that this is a place to support people. It tends to be the people very invested in their kale smoothie solution.

[00:25:35] Patrick O’Keefe: I had this sports community I ran years ago and this poker challenge in the Bahamas, I think, they made this big effort to many online communities where they created this network of accounts. I’m sure you can guess where I’m going, but it’s how great this event is. They were always like, “It’s so relevant. It’s so relevant to the community,” to the point where they started bashing me on Twitter. I basically went all-in on all of their IP addresses and pulled the whole network of accounts together and wrote a big article about it.

Then the CEO called me and they were really apologetic. It was such a bizarre circumstance and ultimately fruitless because I don’t know that there had been all that many moderators that have been convinced by the argument. “You shouldn’t have removed that because it’s not spam. It’s relevant.” This is not a winning argument. It’s not going to work.

[00:26:32] Amanda Petersen: Yes. The links only post is another one because people would just post a link. It’s like, “No, you can’t just post a link. It is not relevant.”

[00:26:43] Patrick O’Keefe: The last rule I wanted to draw attention to was no fundraising.

[00:26:47] Amanda Petersen: No fundraising. Absolutely not. That is a really hard one and it’s one that we talk about and comes up. Rules are there in service of the community and I’m always of the mind if a rule isn’t in service of the community, it goes. The reality is one of my mentors many years ago said the sea of misery is endless, and the point of that was you have to pick what part of the sea that you’re paying attention to basically. You can’t take of ocean of misery and make it better for everyone. Everyone that comes to that Reddit, especially if they’re from the states, cancer is really expensive. If you have one cancer diagnosis, your chances of declaring bankruptcy go up. People are literally dying without treatment. I had friends die because they couldn’t get treatment. I’ve had friends die because they couldn’t access the next phase of a trial because they couldn’t get to the trial. They might not have died if they hadn’t got, but it didn’t help that they couldn’t get there.

When we think about fundraising there’s basically two different types of fundraising. There’s that very real visceral need of helping people pay for treatment. The people who are on the Reddit may or may not be in a position to help. It’s more likely that I’m still paying back $17,000 of medical bills. I will be paying that back for a while. I have spent $200,000, $300,000 on treatment over the course of mine and that’s with insurance.

The no fundraising for the people who need assistance, it’s because the people that are here also need that help. There are places on Reddit where you can get assistance. There are phone numbers that you can call to apply for grants. There’s support there for those people because we are those people. That’s part of it. Then the other part of it is, all of our cancer research is funded. The US government funds a lot of cancer research, but a lot of cancer research is funded by nonprofits.

Nonprofits like the American Cancer Society, Young Survival Coalition, I don’t know if they’re fundraising breast cancer, but the Breast Cancer Research Foundation, those types of places rely on peer to peer fundraising in addition to their fundraising with corporate events. Many of us who have been in the community for a long time have participated in those fundraisers and have helped raise money for them. Again, you are coming into a place where everybody’s already hooked up with it, so it’s fruitless and it’s just probably going to irritate people and make people not feel safe. That’s why. Fiercely protective of our members.

I think that rule does, like I said, we always think about it like would it be better if we allowed people to do it, or would it be better if monthly we did a throw up your GoFundMe pages or something like that. We’ve always, as a group, settled on that there are other places to go.

[00:30:11] Patrick O’Keefe: These rules make sense. I think they’re very practical. Like I said, this is a good example of a mature community knowing what it wants and knowing what works. Those are some rules. Tell me a little bit about the team that makes them real, actually applies them to the community.

[00:30:28] Amanda Petersen: Yes. Thanks for that question. We actually have four moderators currently on the moderator team. We have more who are, I don’t know if you know about how Reddit moderators work, but you basically have to be active X amount of time or you end up getting dropped off. We have about three inactive moderators right now. They’re always welcome back of course, and then we have four of us. There’s me, there’s Litarider, there’s Tapir_Tabby, and then not_today_cancer which is one of my favorite user names ever. We work really closely together completely asynchronously. I have never had a conversation with these people over the phone. I don’t know much about them. I do know some about them, of course, because we talk all the time, but it’s a relationship that is literally built anonymously within Reddit.

We all take turns shouldering that moderation and that trust and safety work. Somebody is reading the posts. Somebody is posting replies. Somebody is monitoring the moderator inbox. We take turns as we need to to give each other space. This work is very difficult. It’s like all community manager work, you spend so much time and effort and focus and energy and emotion thinking about the people. When it’s for a support community, that’s tripled. It’s very easy to burn out.

I’ve had to take six months at a time, occasionally. I had to take that extended year when I was going through brain surgery, but the moderators were always there. They always have each other’s backs. They always have the backs of the community. I feel like that subreddit is successful because of those relationships because at the end of the day, there’s a group of four people who are paying attention and are responding and are waiting in if they need to. It makes moderating the subreddit something I like to do even when it’s hard. It makes it honestly hard to step away from it because these are people I care about. The other people that are on the subreddit, of course, I care about them. They come and go. This is a transient space of people who are in immediate need, but that core group of people makes it so that it works.

[00:32:58] Patrick O’Keefe: Every community needs a core group of people who is paying attention.

[00:33:02] Amanda Petersen: Paying attention.

[00:33:03] Patrick O’Keefe: Yes. Totally. Amanda, I think this has been a great conversation, not great in the “haha” sense, but great in the inspirational sense and just talking practically about what it takes to get things done in communities about tough topics and serve the people that the community is really meant to serve. Thank you so much for making time for us and for sharing so openly.

[00:33:27] Amanda Petersen: Thank you so much for having me, Patrick. It was a pleasure.

[00:33:31] Patrick O’Keefe: We’ve been talking with Amanda Petersen, program manager, community operations at MURAL. Check out the MURAL community at community.mural.co. That’s M-U-R-A-L.co.

For the transcript from this episode, plus highlights and links that we mentioned, please visit communitysignal.com.

Community Signal is produced by Karn Broad, and Carol Benovic-Bradley is our editorial lead. See you next time.

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