I Want My Sex Life Back! TMI, or Gold for Online Communities?

August 4, 2014

“I want my sex life back! Before my breast cancer diagnosis, my husband and I used to…” posted by Susy (forum nickname)

health communityWait! Stop reading before this goes any further. It’s TMI (too much information). Or is it?

“I want my sex life back! Before my breast cancer diagnosis, my husband and I used to…” posted by Susy (forum nickname)

health communityWait! Stop reading before this goes any further. It’s TMI (too much information). Or is it?

Not in my opinion as an online community builder. These types of conversations and the people who are willing to initiate them are priceless for online patient and caregiver communities. Susy’s entry into the SharingStrength.ca community fabric was immediate. She shared openly. She revealed a lot about herself and her experiences and challenges managing a cancer diagnosis because she wanted and needed to talk about the stuff that she couldn’t talk about with her family, friends, and health care team.

In the lingo of community management, we call these self-disclosure conversations. Community managers hope for them; we look for them; we initiate them.[1] Most of all, we encourage them by making a safe space that welcomes open and honest discussions because we know that self-disclosure conversations create stronger connections and deepen the sense of community among the members.[2] As people reveal more about themselves, they connect with others and build trust.

You might think it a challenge to initiate and encourage self-disclosure in online patient and caregiver communities, but I have found it isn’t. People want to share their experience, find others like them to reduce not their own isolation, but also to reach out to others who may be feeling alone. What takes time and effort is creating an active and welcoming community where people feel safe to self disclose their inner most thoughts, opinions, emotions and personal information. Community managers know the importance of investing in the first members of a community to set the tone and establish a community’s “personality.” See more about the role of core members, especially at the inception phase of a community in this paper. I highly recommend reading Richard Millington’s practical guidance on The Art of Forging Strong Friendships Between Members of Your Community.

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When members share personal experiences, they often find they are not alone. Susy’s message didn’t make the other members recoil in horror. It opened the floodgate. Turns out that other people wanted to talk about sex and cancer too. Common experiences were shared, connections and sense of community were strengthened, and activity increased – all ingredients of a successful community.

I want my sex life back!” was the catalyst that transitioned the burgeoning community for women with breast cancer from the inception phase to establishment phase and led to its success.[3]

I was green at community management when Susy gave me this gift back in 2007. Now I know that to establish a community, the founder needs to initiate self-disclosure conversations. If you allow and encourage such discussions, members will initiate self-disclosure conversations on their own, making the community stronger and more valuable.


This blog and my participation at Medicine X are dedicated to “Susy” and “Passirose”, who helped build SharingStrength| FortesEnsemble (which were adopted by CancerConnection.ca | ParlonsCancer.ca). Cancer returned for both Susy and Passirose. They sought online community support again to talk about the tough stuff that life often saves until the end. I will always be grateful to both of them for helping establish Virtual Hospice’s online community.

Flipping the panel at #MedX

On Sunday, Sept. 7, 2014, 9 am at Stanford Medicine X,  @PamRessler @SusannahFox @MeredithGould and I will lead a discussion about the power and pitfalls of people sharing their health experiences online: Communicating the experience of illness in the digital age.  We are “flipping” the panel by sharing resources and participating in online discussions throughout the summer, hoping to include as many people as possible in the process. You can check out our Storify, which lists our ongoing series of blog posts (this one is the third — Pam kicked it off on her blog, followed by Susannah’s post).

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What do you think? How has someone’s self disclosure helped you manage your health or build community? Perhaps you’ve had a poor experience with self disclosure. I’d like to hear about those too. Join the discussion in the comments or on Twitter using the hashtag #medxsm.

[1] Millington R. FeverBee. The Art of Forging Strong Friendships Between Members of Your Community http://www.feverbee.com/2010/12/friendships.html
[2] McMillan DW, Chavis DM. Sense of community: A definition and theory. Journal of Community Psychology 1986;14:6-23. http://mc7290.bgsu.wikispaces.net/file/view/McMillan_1986.pdf
[3] Young C. Community management that works: how to build and sustain a thriving online health community. J Med Internet Res 2013;15(6):e119 http://www.jmir.org/2013/6/e119/

health community / shutterstock