I want my sex life back! TMI? Or gold for online communities and their managers?
By Colleen Young (@colleen_young)
“I want my sex life back! Before my breast cancer diagnosis, my husband and I used to…” posted by Susy (forum nickname)
Wait! 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 only 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 disclose their innermost 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.
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.
Epilogue
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).
#MedXsm
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. (If you prefer to send a private comment, email me at colleen [at] colleenyoung [dot] com.)
References:
[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/
Trackbacks
- Self-disclosing conversations in patient commun...
- I want my sex life back! TMI? Or gold for onlin...
- #hcsmca chats about communicating the experience of illness in the digital age | Colleen Young
- I want my sex life back! TMI, or gold for onlin...
- Weekly Round Up | Journeying Beyond Breast Cancer
- “One person’s TMI is another person’s need-to-know.” | Susannah Fox
- Articles about Disclosure in Online Communities | Colleen Young
- Two Highlights of 2014 that Recalibrated my World | Colleen Young
- Flipping #hccmty – Meet the Panelists | Colleen Young
- “Is anyone there?” – Is your online community a ghost town? | Colleen Young
- #hcsmca: 5-year Retrospective and Looking Ahead | Colleen Young
Colleen Young 
Thank you for writing this article. It is particularly helpful after a conversation I had with a friend. Will ‘self disclose’ more later. K
Sent from my iPhone
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An interesting perspective that I hadn’t considered before. You remain, in my eyes, the Queen of Community Management :)
Mike
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Thank you, Colleen, for bringing up a topic that some people would rate as TMI — sex after cancer — but is so clearly and importantly part of a healthy conversation about LIFE after cancer. What is “unmentionable” to one person is essential to someone else.
I want to bring in two names to this discussion. Two women who have inspired me and changed my mind about so many things: Jessie Gruman and Alexandra Drane.
Jessie was a fierce patient advocate who recently passed away. I think this section of an interview conducted by Lisa Gualtieri is worth quoting at length:
-begin quote-
Lisa: What do you think could help non-activists voice their innovations and experiences on health care issues relevant to themselves or to government agencies or health-related organizations including the “patient voice”?
Jessie: I think a post-visit questionnaire like I get from Open Table for every restaurant reservation would help people feel like they have an opportunity to contribute to change that matters to them.
The vast majority of us have no interest in changing “the system” or our hospital or even our clinic. We just want our doctor to call us back when we are worried about a rash from our new medication or get a prescription re-fill without having to go into the clinic again. Really – most people aren’t interested in being a patient voice. We want to get better and get back to our lives.
-end quote-
And, in answer to Lisa’s question about sources of satisfaction related to her activism? “Knowing that I’m right,” Jessie said. Fierce!
Yet Lisa shared that Jessie later apologized about being so outspoken in the interview. I think that we (who admire her forthright truth-telling) should all put that in our pockets for future use — a free pass to be outspoken. Nancy Shute suggested that we create the “Jessie Rule”: no more apologizing for knowing what we know.
The second person I want to mention is Alex Drane, creator of the most popular panel at the giant Health 2.0 conference: The Unmentionables of Health. Alex also led research on the power of life-context conditions on people’s health, like financial stress or caring for an aging parent. In a separate comment I will add links to these resources.
If we want to transform health — our own, our family’s, our communities’ — we need to speak our truth and own our vulnerability.
Yes, we need to talk about the dangers of disclosure, but we also need to talk about the good things that can come from it. Like getting your sex life back.
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Footnotes for my previous comment:
Lisa Gualtieri’s interview with Jessie Gruman
A Storify capturing the Unmentionables panel at Health 2.0 2013
https://storify.com/SusannahFox/unmentionables-2013
Press release about Eliza Corp’s Vulnerability Index
http://www.prnewswire.com/news-releases/eliza-corporation-presents-data-and-insights-about-the-health-and-financial-impacts-of-vulnerability-at-the-health-experience-design-conference-199899891.html
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So much rich food for thought in this post, Colleen. I’ll start by underscoring your point about how successful online communities are those that create safe space for participants.
Because some need to perceive safety before engaging in self-disclosure, I agree that open frank heartfelt sharing by the community manager is essential; powerfully models community tone and personality. Including guidelines and disclaimers on sites and at the beginning of Twitter-based chats also helps.
In the case of the #ChSocM (Church Social Media) chat community, just starting its fourth year of weekly chats, I established the best practice of opening and closing with prayer. What would be the functional equivalent for an online community focused on health? Maybe starting each chat with an invitation to set aside distractions to be fully present to community during the chat? Dunno, but I think it’s worth exploring.
And as if I haven’t already been thinking about this a lot while preparing for our panel, your questions about personal experiences with self-disclosure intensified that!
Anyone who reads my published work, knows I don’t shy away from self-disclosure. Telling on and about my stuff is threaded throughout my writing. But when I look back, I see that I’ve been much more willing to write about acute medical situations (e.g., wrote about engaging with a CompuServe chat group to get information and support for back surgery for Natural Health magazine back in 1994! “Health On-Line.”) than my life with chronic illness.
In fact, I waited decades before writing about living with fibromyalgia and that’s only because Christine Kraft encouraged me. Encouraged? Ok, she nicely badgered me and pointed out how the longevity of my experience might help others.
What has happened as a result of her publishing “My Fibromyalgia Story” at Better Medicine.com is a loooooong story and this comment is already probably too long. Again, probably not for during our panel but I’d be happy to discuss my reasons for opting out of self-disclosure for so many years. Headline: employment.
To be continued…
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You have provided so many resources here Colleen. Thank you. I went back and reread Pam’s post and read Susannah’s as well and saved the other links. People on Twitter are always doing this to me. I get stopped in my tracks by great ideas and things I want to know about in detail Then, as if the stream of info were going to dry up tomorrow, I store it. It might be as unrealistic as saving a whole basement of full of books to read when you retire and not considering a digital connected future.
.
The Keller/Adams controversy was gripping and ongoing and I stayed on the sidelines and watched it occur. Because the issues made me feel so emotional I followed the story really closely as a silent supporter.
Even though Twitter is so public it is still possible to invade someone’s privacy. though before this happened I don’t think I would have felt the same way.
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Social media has definitely increased my “must read” pile too, Annette.
Can you elaborate a bit more what you meant by “Even though Twitter is so public it is still possible to invade someone’s privacy. though before this happened I don’t think I would have felt the same way.”
Colleen
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Great post Colleen! I first started out as a community moderator back in 2002 on a forum for people with ALS/MND in London called BUILD-UK.net. At the time the concept of disclosing “TMI” online was much more alien than it is now but I was always gratified when someone’s courage in stepping forward to disclose something sensitive lead to many others engaging, especially those that had been silent previously, who felt that yes, this one issue is the one that finally crested their activation energy to jump in too.
Another striking thing was the “public intimacy” of patients on the forum sharing thoughts on issues like euthanasia, caregiver burden, or hope as if it were the most personal interaction in the world between just the 5-10 of the most engaged members. What they couldn’t see were the invisible ripples around the country and indeed the world that went unrecorded – tears of recognition and validation from strangers on the other side of the world clicking through at 2am in the morning who felt (but didn’t record) their gratitude and transformation in viewpoint resulting from that gift. Even better was the fact that due to improved search and archiving, these precious jewels could deliver value even years and decades later, practically immortalized in digital amber.
A lot’s happened since then, and as I look to the future the big inflection point I can see coming is in the nature and source of where this information originates. In my first community the users would write out volumes of open text narrative, with minimal demographics embedded in their avatar, screen name, or signature (otherwise you had to trawl a few thousand posts to get their story). Everything was self-report, nobody knew you were a dog, and those with the most compelling narrative and time on their hands often “won” the arguments. Once PatientsLikeMe came on the scene we encouraged more of an emphasis on data sharing – “put your data where you mouth is”. While that was encouraging to some, particularly the quantified self crowd, I’d be the first to admit it doesn’t necessarily work for everyone, but the big change now was that I could see in a profile that the person sharing their TMI was 37, lived in Arkansas, had tried the same treatments as me but not found much success, and was currently suffering with insomnia and anxiety. Now with all that extra context around her “TMI” whatever that might be, I think I as a moderator or other users as peers were in a better position to interact efficiently and offer the right support. There’s a lot of data nerdery underneath PLM along the lines of conditions, treatments, symptoms, PROs, all the rest of it, and that’s enabled a bunch of other neat things, but one thing is still the same: it’s self-reported data.
We’ve done a few things in swimming upstream within the medical-industrial complex to help patient reported data be taken seriously but there remain plenty of limitations, not least that our system relies on people to come back and continue being engaged in order to build the most advanced benefits we can develop, such as predictive modeling of disease.
By contrast I think we’re teetering on the edge of a world in which we don’t have to be so reliant on patient reported data – we’ve got pipelines being built to EMR data, PHR portals, wearable devices, pharmacy loyalty cards, smartphone data, you name it (great summary here https://twitter.com/JAMA_current/status/469567775787454464/photo/1). And as a researcher I am psyched about that – now I have a chance of really knowing if “TinkerBell325” is really who she says she is, that she really has the disease she says she has, and even better than that we can relieve her from the burden of typing all that data in. However. In the patient-reported past/present, Tinks has got full control over what she exposes to the world. It’s *hard* for her to type in to a system like ours that she’s had a suicide attempt, a miscarriage, an STD. Now though we’re hurtling towards the world in which it’s as easy to port *all* that data from her closed and clunky medical record over to a patient powered research network or similar system as it was to login to WordPress with my Twitter handle. The difference between the patient-reported TMI is that it was viewed with scepticism – nobody knew she was a dog. Maybe she was a bored teenager on his summer vacation trolling a forum, a fantasist, an undercover journalist. But once the data is “validated” as all the researchers and regulators clamor for, then suddenly this objective TMI is more real.
For some, that is great. E-Patient Dave gets “his damn data” at long last. I get to blow the existing architecture of science out of the water, which tweaks my dopamine no end. Developers can have fun with medical equivalents of Twitter verified accounts or validated Amazon purchases to increase the credibility of social blather and product reviews. And many many people will benefit. But in the margins we’re also going to see some people harmed, perhaps quite seriously, because the fidelity and the accuracy and the weight of objective TMI is immeasurably higher than the patient-reported TMI, and by its very nature even a small fragment of true data exponentially increases the identifiability of that patient by other actors, whether good or bad.
So what are we to do? Technology is not the whole answer here. My own instinct has been to goad those in positions of power to think about protecting these people from harms that could be inflicted on them by bad actors whether that’s insurance companies or stalkers or employers or the media. Ultimately the answer is social (not my particular iceberg to steer) but we need to get to the point where having a GI disorder isn’t embarrassing, where making a choice about your body doesn’t get you vilified or worse, where disclosure of TMI that benefits others is seen not as a weakness or a failing but as a donation to the world, a gift that can never be repaid.
Paul
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Paul, many thanks for this incredibly thorough response. I am still unpacking the layers that you have presented here and will be returning to this post often.
Your closing statement rings particularly true “Ultimately the answer is social … we need to get to the point … where disclosure of TMI that benefits others is seen not as a weakness or a failing but as a donation to the world, a gift that can never be repaid.” My response – a resounding YES!
It certainly takes courage to disclosure personal information and the value of sharing such information, as you illustrate, remains the social human factor – member response. Such response is reliant – at least initially – on skillful community management enabled by technology. Oh, to be able to measure all the “invisible ripples” of benefits, transformations, change behaviours resulting from the initial disclosure. Great work is being done in this area. If anyone has references to list, please add them to this post.
Perhaps I’m not dreaming big enough, but part of your message sends chills down my spine. I rather like that the “system relies on people to come back and continue being engaged in order to build the most advanced benefits we can develop…” I would want to be involved in the porting of all my data. Impossible?
I’m confident that you and I, and most people reading this post, share the viewpoint that ethics trump all. Just because we can doesn’t mean we should. Can systems be built and data collected with “ethics by design”?
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Not my cup of tea. As an introvert I reflexively hesitate before sharing *any* personal information with *anyone* As a pre-ACA patient, I intentionally withheld information until my Jan 2013 coming-out http://bit.ly/1kb79dU.
Note that I’ve been fully indoctrinated by the academy: I studied journalism during the period when we still believed in objective voice (snort!) and have worked for / been treated by academic physicians for almost 14 years. I seek a high signal-to-noise ratio in everything I read, hear and say.
Post-cancer treatment I switched careers and now work directly with patients. I am humbled by this rewarding work, tho it consumes a great deal of my emotional energy.
When I participate in patient communities my contribution is rarely personal. While I recognize the movement and support authentic peer support, for me it’s a low ROI. You can call it snobbery; call it impatience…I call it prioritizing use of my time and limited mental/emotional bandwidth.
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Eve — lots of head nodding as I read your comment, especially the kicker, “I call it prioritizing use of my time and limited mental/emotional bandwidth.” In my own case I’d add “choosing an identity that’s not inextricably tied to being ill.”
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Thank you Eve for balancing the conversation. I have not seen all the contributions that you have made to online patient communities, but I boldly dare to conjecture that you have probably been personal. Now before you scold me – being personal is not limited to sharing personal health information.
You see, as Meredith so aptly phrased it, many of us choose “an identity that’s not inextricably tied to being ill.” But we share our views, interests, and so much more online that does reveal the personal – albeit professional personal. These conversations are also deemed self-disclosure in community building. Our commonalities help us create bonds and trust. Whether a community of practice (e.g. #hcsm/#hcsmca), community of action (social change) or community of circumstance (health/illness), the wise community manager will purposely ignite conversations to seek out the commonalities. Here, Richard Millington lists 20 such questions http://www.feverbee.com/2010/11/increaseactivity.html
Colleen
PS: For those who may not know, ACA = Affordable Care Act (US healthcare term sometimes referred to as “Obamacare”) http://en.wikipedia.org/wiki/Patient_Protection_and_Affordable_Care_Act
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Excellent post, Colleen! And until Eve’s comment, I was thinking that the response to TMI was going to be a universal lovefest. As you know, it’s so important to respect both ends of that TMI spectrum.
My observation has been that willingness to share the most delicately personal items online may be dependent on many factors entirely beyond the sensitivity of the actual subject matter being shared, including:
1. Personal preferences (as Eve wisely points out, introversion, for example, vs Tell-All: those who seek to share even the most private bodily realities to anybody who will listen. I’ve sat next to these people on the bus long before online support communities came into being…)
2. Propensity for discretion (those who post the same revelations on multiple topic boards having nothing to do with their own diagnosis. We see this a lot on large multi-diagnosis sites like Inspire.com where some patients have been known to share a post on 47 different boards. Because they can. Attention must be paid! Again, see #2)
3. The trajectory of the disease (as we used to say in hospice palliative care) in which the content and frequency of the freshly-diagnosed who first discover online communities tends to be different compared to somebody who has been living with the diagnosis for years. Research published in the International Journal of Communication by Israel’s Dr. Galit Nimrod offers an interesting perspective on this phenomenon by describing the distinct phases identified among online community participants at different times – from “distressed newcomers” through “active support givers” to “moving-on quitters” and everybody in between. More on Dr. Nimrod’s work at: “Discover. Join. Leave. The Life Cycle of Online Patient Groups” – http://myheartsisters.org/2013/09/04/lifecycle-of-online-groups
Best of luck to you, Pam, Susannah and Meredith at Medicine X next month!
regards,
C.
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Carolyn — I love all your points and the one I’m especially keen on is #3 about the lifecycle of participation within online communities. No surprise, given the fact that I’m a sociologist!
Four years ago, I wrote about becoming “an elder” http://healthsocmed.com/2010/11/03/guest-post-elders-in-the-hcsm-community/ and although that post wasn’t addressing patient communities per se, the status of community elder is functionally similar to those Nimrod characterize as “active support givers.”
Having observed and participated in face-to-face as well as online community development and management, I’ve come to believe that possibly the only significant differences are those of velocity and reach. Everything online happens more quickly and is accessible by more people — bad behavior and TMI, but also opportunities to help heal what cannot be cured. I’m wondering if that’s your sense as well.
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So true, Meredith. Velocity and reach, both bad behaviours and opportunities to heal, each a constant in online communities. In online support groups specifically, it can be a (surprising) gift to click on a patient site in the middle of a sleepless night and discover a dozen helpful replies to last evening’s urgent question. Conversely, ugly troll behaviours can decimate a site’s usefulness if moderators don’t take swift action – and many sites are barely moderated if at all.
Thanks for that link to your community elders post – well done!
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Carolyn,
I, too, feared a lovefest and was delighted that Eve introduced another surface of the multi-angled prism about self disclosure online. I always welcome respectful debate because like self disclosure, conflict, controversy and multiple perspectives are good for community building.
You make 3 excellent points to which I’d like to respond.
1. Personal preferences – indeed not everyone likes to share. But as Paul points out above there is a invisible ripple effect of online sharing that may be satifying those who do not respond.
2. Taming the oversharing – community moderators (and in some communities, the core members) have a duty to model and sometimes correct behavior, such as multiple postings of the same message.
3. Like Meredith, the community lifecyle interests me immensely. Communities need “active support givers” to sustain and thankfully there are people that willingly fulfill this important role. However, in many patient communities, “moving-on quitters” can be regarded as successes. Take for example, as community for people who have lost a loved one – as people move through their grief, there comes a point where they rely on the community less and less. This is a good thing.
But, I wonder about the online friendships they have made through the grief community. They are often very strong. Should such a community create a space where that allows the other commonalities that connect them to flourish – whatever that may be space travel, grandchildren, or gardening?
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Carolyn,
I, too, feared a lovefest and was delighted that Eve introduced another surface of the multi-angled prism about self disclosure online. I always welcome respectful debate because like self disclosure, conflict, controversy and multiple perspectives are good for community building.
You make 3 excellent points to which I’d like to respond.
1. Personal preferences – indeed not everyone likes to share. But as Paul points out above there is a invisible ripple effect of online sharing that may be satifying those who do not respond.
2. Taming the oversharing – community moderators (and in some communities, the core members) have a duty to model and sometimes correct behavior, such as multiple postings of the same message.
3. Like Meredith, the community lifecyle interests me immensely. Communities need “active support givers” to sustain and thankfully there are people that willingly fulfill this important role. However, in many patient communities, “moving-on quitters” can be regarded as successes. Take for example, as community for people who have lost a loved one – as people move through their grief, there comes a point where they rely on the community less and less. This is a good thing.
But, I wonder about the online friendships they have made through the grief community. They are often very strong. Should such a community create a space where that allows the other commonalities that connect them to flourish – whatever that may be space travel, grandchildren, or gardening?
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Such a good point about the “moving-on quitters”. As Galit Nimrod describes in the study I quoted, those who were once active in an online support community often move on precisely for the reason you mention. It can be a sign of success, not just a disgruntled quitter.
As for continuing friendships online, I’d love to see them taken OFFline as soon as members realize they are veering off-topic. It used to be hugely distracting and annoying for me as a freshly-diagnosed heart patient with many questions to have to plough through endlessly chatty weekend updates and ‘in-jokes’ from longterm members on a post topic that was ostensibly about serious cardiac issues I was desperate to learn about.
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Indeed, the chatty-ness of longterm members can be not only distracting for the freshly diagnosed but detrimentally off-putting to the point that a potential new member would choose not to post. Couldn’t the community be structured such that there be a designated space for such off-topic discussions?
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I’ve found those hot-button issues really do bring out conversation. Online communities are the chance to say what is never said. Also, they are a chance to say the same thing, as many times as needed, to a group who has been there. Participation in the forums seem to come in waves, and that’s okay. A certain set of users will be there for one another, and candid in ways they might not be in person.
Sometimes just having the resources online are enough, other times the forum is a good tool. We have also launched a blog series based on forum & online conversation around sexuality. Clearly there is a need. :) ~Catherine
(Personally, I love those who dare to break the taboo. Even online, when no one else is writing about it – it can be a daunting first step! BUT, it’s also a first step in an environment that’s well designed to continue that discussion. It’s a place of change, as well as connection.)
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I think the community is indebted to you Colleen (as always) for generating such a rich thread of conversation around one of the critical issues of health and social media – namely how patients interact within online communities.
Health-related online communities are one of the very few areas (I think) where new social media platforms have really added a new dimension to how people deal with health issues in the 21st century. How and how much information people share about themselves and their condition/illness/health is a critically important part of that.
As you know, the initial post prompted me to consider the value of tweeting mundane information about a routine health procedure on my part (‘Should I tweet my colonoscopy”) and where to draw the line between TMI and helping educate or inform others by providing health information in a personal context.
Also, as we delve more and more into this I think we also need to be constantly reminded of health inequalities and health literacy and the fact that many of those who are unable, unwilling or just not aware of the support offered by online health communities are not taking advantage of everything on offer to help people manage their own health. It adds a whole other dimension to issues of universal access to care which always preoccupies us as Canadians.
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Thank you, Colleen for your post and thank you to all you have so thoughtfully commented — wow, so much to think about!
I believe we are seeing the evolution of online communities and are feeling our way in the area of disclosure in much the same way other cultural taboos have been challenged. Reminiscent of the early era of AIDS in the 1980’s where activism, discomfort, fear and courage evolved to include a broader discussion with a larger population. Are we now witnessing a similar evolution through online communities discussing the previously unspeakable? Perhaps part of the evolution is also honoring the choice of each individual in how much they want/need to engage in public disclosure? I am filled with gratitude for those who courageously blazed the trail of opening the discussion and decreasing the isolation connected with chronic illness and continue to be in awe of the connections and communities forged the digital space.
I am humbled and honored to be playing a part in this ongoing discussion with so many of you…please continue the conversation with us (@Colleen_Young @SusannahFox @MeredithGould @pamressler) before, during and after our panel presentation at #MedX by using our hashtag #MedXsm
Pam
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A tsunami of memories when you referenced discussing AIDS during the early 1980s. Bragging rights to organizing the first paper and discussion panel about the social epidemiology of AIDS for national sociology meetings…in 1981. No shortage of “stuff” came my way for that but we started, even back then, busting the myth that it was the “gay man” disease even though almost everyone on the panel was a gay activist. Wild times.
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Thank you Colleen, Susannah, Pam & Meredith for “flipping the panel” and seeing how patients feel and think about self-disclosure to fortify your already extensive experience in patient community management.
Colleen, I loved your post. If you ask, people will answer. If you listen, then ask, people will stampede.
Three years ago Alicia Staley, Dr. Deanna Attai and I wondered out loud whether or not women and men affected by breast cancer would tune in every Monday night on Twitter to share their experiences to help and empower each other. They are still tuning in and every week we are still opening up new and deeper topics (last night: faith & spirituality). We listen and ask. There is always a vibrant discussion.
On #BCSM I quickly saw that some did not realize that Twitter wasn’t a closed platform, or that #BCSM wasn’t a walled-off chat room where our conversation was private. Yes, the hashtag makes the convo easier to follow but it does not guarantee privacy. And one of my goals was to never, ever create a situation where another could easily “over-share.” Consequently we quickly decided that some issues about survivorship, namely sexuality, would not be well served in a tweet chat format. We did have one chat on sexuality but did so an indirect way by covering a webinar that Johns Hopkins put on the week before. What someone might say in a closed space — “I want my sex life back” — is another case if you’re on twitter without a pseudonym. Of course we can not ever control what others will say or how much they themselves will choose to share. But I do feel an obligation to ask questions with sensitivity and tact, to ask questions that may help spur creativity and growth. Without those considerations some conversations about breast cancer could easily degenerate into a rant fest and that’s not what any of us want to do.
The issue of self disclosure in the digital age for me personally is in flux. It was one thing before I was diagnosed with mets. I had emerged from treatment for a locally advanced breast cancer, got healthy, stayed healthy, learned to help others from a place of strength, knowledge and concern. Now that my disease has returned I have suddenly found myself more hesitant at times. Illness brings vulnerability and that is not a comfortable place. It’s a boundary issue that is different for every individual — and every reader, too. We talk so much about what to disclose. Another issue to consider is how is the information — or what I disclose — perceived? In my case, are people getting an “accurate” picture of metastatic disease? Do my disclosures make others fearful? Less likely to take healthy measures since “they’re destined to get mets anyway?” I actually hear this. It bothers me enormously. I’ll tell you — it’s a real conundrum with me and has been since I was re-diagnosed. It’s harder for me to advocate because I often find myself in tears for those who have died in the short time I’ve been living in this new phase of life. Yet advocacy is what we need. Strength and voices for those who are too ill or weak to do so themselves.
Thank you for this excellent topic. I went sideways, naturally. But then again, I always do. Let me know how else i can help.
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Oh Jody, your “sideways” is typically on-track and on topic.
Appreciate your observation about being in flux. In my own case (which does not involve cancer that I know of) I’ve noticed flux about self-disclosure changing with age — at least I think age might be the primary variable — but also, as you wisely note, wondering if, when, and how disclosures are helpful.
And helpful to whom? Which raises these related issues: Am I practicing radical self-care or am I being selfish? Am I caring or co-dependent? And so forth and so on. World without end?
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Bang on Jody! Thank you for these incredible insights.
Key takeaway for me is “The issue of self disclosure in the digital age for me personally is in flux.” “Illness brings vulnerability and that is not a comfortable place.” Sometimes vulnerability propels sharing; other times we hold back and try to protect ourselves because we feel vulnerable.
You, Meredith, Pat and Marie all point out that you are considering the reader, asking “Who is this going to help?” Is this the trajectory of gaining a following, online notoriety and with that a responsibility? Did you feel this responsibility when first starting sharing online and blogging about your cancer experience?
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So I think you know how excited I am about your panel and to realize that my own MedX presentation dovetails nicely with this important topic :-) . Audre Lorde, writing as a breast cancer survivor 3 decades ago observed “My silence had not protected me, your silence will not protect you”. I think of these words often when I hesitate to hit the “publish now” button on a blog that could be labelled (indeed has been labelled) “TMI “by family. And yet I choose each time to reveal myself in all my vulnerability and woundedness in the hope that others will come to recognize that there is strength in vulnerability and owning our truth is a way out of the silence that holds us back from healing, not just as individuals but as a society.
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Marie, I’m anxious to see how our 2 MedX presentations relate. (I’m not surprised.)
Interesting that you, Meredith and Jody refer to the vulnerability of illness. In online sharing, the vulnerability is often overlooked, especially in articulate and skillful writers such as yourselves. I refer you to the question that I posed to Jody above.
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Great question Colleen! Being more open is something that has come with time. As my blogging community grew and I began to feel it was a safe place to express myself, I felt more confident in sharing about my experience with infertility and depression. I could count on the fingers of one hand the number of people in “real life” I could have this discussion with, but online i found a supportive community who listened and understood my pain. One of my favorite quotes (I do have a lot of favorite quotes!) is by Albert Schweitzer (I’ve paraphrased here)
“Whoever among us has learned through personal experience what pain and anxiety really are must help to ensure that those out there who are in … need obtain the same help that once came to her. She no longer belongs to herself alone; she has become the sister of all who suffer”
I guess I no longer feel my story belongs to me alone but if there is any wisdom or understanding to be gained from it, it is my duty now to pass it on.
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My own perspective is that of a parent of a rare disease child. My story and my sharing necessitates sharing information about my affected child and even my non-affected one. This came more easily when he (and she) were younger. But has become more complicated as they got older.
My own online community has been so important for sharing resources and support for me and my community in following our rare disease journey but as my kids get older I have become worried about that line of sharing/oversharing. What is my story to share vs their story?
As I am still pursuing a diagnosis it is so important to keep connected and keep searching for answers but I have to still respect my kids’ privacy.
My own needs as caregiver and needing support/strategies/resources to support them in their journey is also something that I look for personally but again, bumps into their privacy rights.
And of course, as a community manager, how do I balance and help my community find its balance? I’m really looking forward to this conversation.
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I agree with Isobel- there is a balancing act that we ourselves are currently facing. As he ages, how much and what will we share? Where does HIS story separate from our own?
We are committed to being as open and honest as possible. There are times ahead where sharing will still be VERY important (maybe not for ourselves but for others following a similar path) but we are very aware that we must respect his right to privacy…..
You see, this journey is frightening, and difficult at a level that I lack the words to explain. But it needn’t be solitary. Perhaps the most important thing that we have learned is that sharing our story- whether it’s around a fire, beside the proverbial water cooler, over coffee with friends, or on a blog- connects us to others. During a time in our lives where we felt very, very alone, we managed to connect with people far and wide. We were able to surround ourselves with people in similar situations and together we shared the bumps and bruises of the journey. Through many other’s stories, we caught glimpses of ourselves. As patients, we have less interest in the metrics used to study what we’re going through. We want to connect with people like us and understand HOW THEY GOT TO WHERE THEY ARE. How are they managing their day to day lives while everything is upside down? Without self disclosure this would not have been possible. The research studies give us numbers, or talk about treatment options but they mean little to nothing if we don’t understand our condition.
We are human. We seek connection. We look for similarities. We NEED these things to make it through whatever life throws at us. Think of the internet as a very large water cooler if you must.
There are many people that are critical of patients “oversharing”, within the complex and enormous scope of the internet. We seem to have little concern over stories of healthy living, happy marriage or financial wealth, Heaven forbid we speak about the messier side of life- the illness, the messy divorce or the financial ruin. But in my opinion, these are the stories MATTER. These are the stories that we are looking for- because WE KNOW what healthy life is supposed to look like- and we haven’t got it!
These stories are the key to evolution.
From patient. To Epatient.
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Thank you Isabel and Jennifer for bringing the e-parent into the discussion. The motivation and drive to seek for answers and to share to find solutions is so strong when doing so on behalf of a child. Stories matter.
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