– Meredith Gould, aptly summarizing a key discussion point for our upcoming panel, “Communicating the experience of illness in the digital age.” (TMI stands for “too much information.”)
We are flipping the panel, posting ideas and sparking conversations in advance so that when we arrive at Stanford Medicine X, the on-stage event will be one more link in the chain, not the starting point.
Catch up:
- Review our Wakelet collection.
- Tweet using the #medxsm hashtag.
- Check out all four panelists’ blog posts: Pamela Ressler, Susannah Fox, Colleen Young, Meredith Gould.
- Review the two tweet chats devoted to the topic:
- health care social media Canada #hcsmca transcript
- hospice and palliative medicine #hpm transcript
What else can we do to engage more people in the discussion? Please share ideas in the comments.
I recently read an interesting blog post, Reflections on Bipolar Disorder Upon the Death of Robin Williams, wherein the author, Tracy Wisneski (@TracysTMI), helped shed some light on the highs and lows experienced by those who suffer from bipolar disorder and made a compelling case for offering those with bipolar disorder them more understanding and less judgment.
As you know, I periodically bang the drum (here and elsewhere) for recognizing the silent suffering of those with “undiscussible” medical challenges – which, I would argue, includes nearly all forms of mental illness, sexually transmittable diseases and other conditions that are often judged as resulting from deficits of judgment, wisdom or willpower.
I bang the drum here, both to call attention to Tracy’s wonderful post, and to a brief Twitter exchange about the post, in which Tracy wrote “I sure did wear that TMI in a big way today”.
I don’t know if any of this is relevant to your goals in writing this post … but I felt prompted to share it, just in case.
This is exactly relevant to my goals – to learn, together, what it means to be open to the possibility of help from one another. Thank you, Joe!
I’ve been thinking about how to engage more people in the conversation about communicating illness in the digital age.
One way that we could do that is to expand the conversation beyond text, to make it more visual — or auditory, or experiential. The four of us on the panel have (so far) expressed our viewpoints in words — blog posts, tweets, emails to each other. What about all those people who are visual learners? How can we better learn from those who express themselves through drawing, painting, building, or dancing?
Katie McCurdy, an e-patient scholar at MedX in 2013, is a leader in the field of visualizing health data.
First, read her post about experiencing other people’s illnesses by walking beside them, sharing their physical space:
Ode to Stanford Medicine X e-Patients
Then check out a project she worked on with her collaborator, Virgil Wong, to create beautiful data visualizations of people’s symptoms:
Data Visualization of Symptoms to Improve Patient Doctor Communication
Tracking health data has been a big part of my work for the last few years, with some critics saying it’s narcissistic. That, to me, is an echo of a critique we hear about people who blog about their illness: it’s narcissistic. In fact, it’s more often the opposite: a selfless act. A sense that if you can share the right information at the right time with the right person, you might help them. By solving your own mysteries, you may help to solve someone else’s, too.
Yes! Having started out as a visual artist with a lot of musical education, I can say that art and music have been a way of managing as well as expressing illness and healing — or the desire for it, at least.
When Pinterest first came on the scene, I was a fierce advocate of its use not just to promote health and wellness education, but as a vehicle for self-expression, especially for those who believe they can’t draw, paint or whatever.
Not a lot of pins on this board, but I set up “Inspired Healing” (http://www.pinterest.com/meredithgould/inspired-healing/) for my own comfort and then used it during a Mayo Social Media Residency to demonstrate a tool for non-verbal engagement with patients and caregivers.
Beautiful!
In case anyone’s looking for more resources on this topic:
Foundation for Art and Healing
In case you haven’t read Colleen Young’s post and the (so far) 38 comments, here’s a relevant one about TMI, from Paul Wicks:
“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.”
Here is the direct link to my blog post and the fabulous comments.
I want my sex life back! TMI? Or gold for online communities and their managers? http://cyhealthcommunications.wordpress.com/2014/07/30/i-want-my-sex-life-back-tmi-or-gold-for-online-communities-and-their-managers/
Thanks for the shoutout Susannah.
Since my blog is my outboard memory, I’m noting here that I want to remember a comment posted to a beautiful essay about motherhood & sick kids on KevinMD.
Amanda Rose Adams writes: “I fully support the mother who commented about how her desire to talk about her child’s experience is mis-perceived as a bid for attention. Talking (or writing) about it is a psychologically valid method to reframe and find meaning in our experiences. It’s part of the healing process, and to disrupt that causes further injury. Thus we tend to cluster and talk amongst ourselves, which initially is a safe place to begin our healing. In the long term we must speak out about the threat and realization of child mortality. Our culture is sick (literally unwell) in how it shuts down any deep or meaningful conversation about serious issues.”
The full essay and conversation can be found here. And I added it to the Storify.
I also want to note a thought this inspired for me: When we conducted our first fieldwork project among online patient/caregiver communities, I was shocked to see the length of some of the responses. Tom Ferguson, our advisor, had told us to expect long answers and luckily our survey house complied with our request for no-limit text boxes. Pages and pages of testimony poured in. And when asked at the end if there was anything else they’d like to share so we could understand their perspective, many people thanked us for the opportunity to respond. They thanked US. I’ll never get over that.
How might we learn from that experience? That, when asked, people pour out their experiences, wisdom, advice. That, when not asked or not given a respectful forum, people do not share.
Interesting to reflect on the tendency to “cluster among ourselves” given the recent Pew report on Social Media and the Spiral of Silence.
This passage from the essay aligns very nicely with recommendations made by Tracy Wisneski in the post I mentioned earlier, with respect to practicing empathy and non-judgment and recognizing that we often cannot fully understand the plight of others who are rising (or failing) to meet challenges we have not experienced ourselves.
With respect to children and TMI, the recent article by David Eagle in The Atlantic, I didn’t expect to find pornography in my 9 year old’s web history touched of a storm of controversy about parents sharing TMI about their children (nicely summarized in an On The Media blog post on pornography and privacy).
I don’t mean to suggest that the essay (and comments) at KevinMD raises the exact same issues as have been raised about David Eagle’s article – the health issues in that essay are not nearly as “undiscussible” (or “unmentionable”) as pornography use tends to be – but I do think it is important for parents to take into account potential future privacy issues relating to their children when they choose [how] to engage in self-disclosure – and other-disclosure – in social media … another dimension to consider in “one person’s TMI”.
I’ll read those essays about porn – great to have examples outside of health!
And yes, our #hcsmca Twitter chat included some discussion among parents about the different responsibilities they (we) have. For example, this question was posed: “For the parents/caregivers in this chat: How do you draw the line between what you will & will not share about you kids/fam?”
@anetto responded: “Once saw situation where mom had revealed too much. Child was outraged by loss of privacy. Big effect on family”
@mindthecompany wrote: “That is an ongoing dilemma. Currently separating his story from “our” journey.”
We could probably devote an entire panel to the ethics of social media use while parenting.
I have probably shared elements of the personal philosophy of Carl Rogers in other blog posts here (and elsewhere), but I think this one passage is particularly relevant, so I hope you’ll excuse the potential redundancy.
Thank you, now and every time you share that passage. It’s been a source of inspiration to me.
Hi Susannah, Thanks for posting this. Just makes me chuckle the pickle that life puts some of us in (“even telling people the name of my condition is TMI”). Thank you for continuing to normalize these discussions. Having a problem that people feel like they shouldn’t talk about is detrimental in a big way. So much needless suffering.
I look forward to attending your panel on Sunday. I’ll be leading a workshop on Saturday morning (9:20AM, LK305) that you’re personally invited to attend. It will be on the challenges of ePatient solution sharing. Basically what challenges we weren’t aware of until we actually tried to get people sharing. Hopefully we can crowd source some insights. Thought the topic might be of interest to you — maybe because you talk it all the time ;).
Thank you! Your workshop is on the top of my list for Saturday. Once again I’m a bit overwhelmed by the choices set before us on the MedX program. When are we going to have time for walking meetings on that beautiful campus?
I know, right? And since the quality gets better every year I feel like there are key breakout sessions that I’ll be missing for lack of time. At least MedX comes with that “Awesome or your money back” guarantee. Ha ha.