As if I weren't already deep into pondering illness and self-disclosure in the digital age for the upcoming panel at Stanford Medicine X, this morning I woke up to a Mashable article reporting that Robin Williams was in the early stages of Parkinson's Disease.
I zoomed in on these two paragraphs within the statement from Williams' wife, Susan Schneider:
"Robin's sobriety was intact and he was brave as he struggled with his own battles of depression, anxiety as well as early stages of Parkinson's Disease, which he was not yet ready to share publicly.
It is our hope in the wake of Robin's tragic passing, that others will find the strength to seek the care and support they need to treat whatever battles they are facing so they may feel less afraid."I, for one, will be watching to see if and how the public conversation shifts from being about depression and alcoholism to being one about PD. And what if Robin Williams had gone public with this information? Annoying counterfactual or stimulus for thought? I hope it's the latter.
Thanks to digital technology, that care and support is now available 24/7 to anyone who is not only willing and able to access online communities of support, but willing to disclose what hurts and disturbs at all levels -- body, mind, and spirit.
At this point in the 21st century, people do seem more willing to use online social networking communities to disclose illness, chronic and/or terminal. Have online digital technologies in general, and online communities especially, changed the parameters of self-disclosure? I believe so. For the better? I say "yes" to that as well, although there can be unintended (but not unexpected) consequences of doing so.
This is exactly what Pam Ressler (@PamRessler), Susannah Fox (@SusannahFox), Colleen Young (@Colleen_Young) and I will address on Sunday, September 7, 2014 at 9AM during our panel, "Communicating the Experience of Illness in the Digital Age" at the Stanford Medicine X conference. And yes, we've created a special hashtag for it: #MedXsm
In practical terms, this means we're offering and inviting resources and conversation before heading out to Stanford. At the foot of this post you'll find links to blog posts from Pam, Susannah, and Colleen, plus one to the Storify that Susannah is curating.
Meanwhile, we want to know what you think about the new world of disclosure -- self or otherwise.
- How has self-disclosure changed for you in the past five years?
- What factors have led to those changes?
- Are you more or less likely to engage with someone who openly discloses personal health information? If you're likely to engage, is it in public or via the back channel?
You're invited to carry on in the comments box. I'm hoping you do.
- Pam Ressler's post about the panel: 2014 Medicine X: Communicating the Experience of Illness in the Digital Age, which addresses the abyss of understanding about what it means to live with chronic and/or terminal disease.
- Susannah Fox's post about the historical context for sharing health and illness online: Communicating the experience of illness in the digital age
- Colleen Young's post about self-disclosure and online community development: I want my sex life back! TMI? Or gold for online communities and their managers?
- Storify with content and conversation about the upcoming panel, including highlights from the #hcsmca chat (August 6, 2014).
Attend MedX via livestream by registering for the 2014 Global Access Program.