Friday, August 15, 2014

Stanford Medicine X (Part Deux): Pondering Illness and Self-Disclosure in the Digital Age

[2nd in a mini-series of posts about attending the Stanford Medicine X conference this September.]




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

But wait, there's more! We decided to "flip" the panel, a technique grounded in the practice of "Flip Teaching" wherein students are invited to learn before getting into the classroom. It's a technique that generates more productive classroom engagement. It's also a technique gaining traction in the world of healthcare (see: Flip the Clinic, a Robert Wood Johnson Foundation initiative).

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.

More Background
  • 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.

5 comments:

  1. Great blog post. Very insightful! I'm considering an entire blog post dedicated to this Meredith. In some ways knowing others online has been tremendously supportive and helpful. The community of people - healthy and chronically ill - has helped me kick in the closet of shame and find my voice. There are some areas where I'm still tremendously private though - and I'm not sure if I'm judging myself or others because I'm afraid or because I have self-doubt. Thank you for allowing me to reflect on this more!

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  2. Thanks, Melissa. I'll wander over to your site to leave a comment there as well, but here and now I'll say that self-disclosure (relative to health) has changed for me in the past five years.

    I tend to be more open about my fibromyalgia but it's still a challenge for me to talk/write/tweet much about it because I don't want to be defined by my condition. I also find a certain level of denial keeps me ambulatory!

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  3. Great post Meredith!

    I contend that disclosure, doesn't necessarily mean full disclosure. As you and Melissa mention, there remain details that one keeps closely guarded. Of course, there are!


    Let's take this out of the health realm for a moment. When building relationships, on or offline, we don't reveal all - at least not all at once (if ever). The first connection may be made through a common interest like knitting for example.Then it is shared who the knitting is for (a grandchild perhaps), and eventually more intimate details about family relationships are shared, etc., etc. As bits and pieces of ourselves are revealed and commonalities discovered, trust is built and we share more, but not necessarily all.

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  4. Thanks, Colleen (panel-mate!)and totally agree. I left a comment on Melissa's blog referencing Caryolyn Myss' point about "woundology" and hope to raise that during my nanonsecond of speaking at MedX.

    Amazing (hyperbole)how in the domain of health and healthcare everyone (more hyperbole) immediately leaps to assume that disclosure means full disclosure. So. Not.

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  5. How has self-disclosure changed for you in the past five years?

    I was diagnosed with Bipolar Disorder, Generalized Anxiety Disorder and OCD 4 years ago.
    I had a strong professional and personal support system online at the time. And I decided initially to share this new life-changing information through back channels of Facebook and Twitter. Then, as the need for more support grew, and my need to be a person of more integrity online - same in person as online about the illnesses and what they meant for me - I shared openly on Facebook and Twitter and started a blog about living with the illnesses.
    Now, besides these illnesses, I share openly on social media nearly everything that is going on for me, the good and bad. Unless it involves another person directly. For instance, I only made one post explicitly about the breakup of my 17-year marriage. I mention it online in passing Only as it relates to my personal well-being. And even then, because it involves another person, I don't mention it as a factor nearly as often as it is, to protect his privacy and reputation.


    What factors have led to those changes?

    More of my friends from various times and places of my life are now on social media (or willing to follow links to my blog) as the years progress. It's my primary way of keeping up friendships.

    Are you more or less likely to engage with someone who openly discloses personal health information?

    I'm more likely because of how life saving (literally), others' interactions with me have been. Sometimes a simple FB like or short twitter response has reminded me that I am not alone. Many times people have important observations, resources, words of help. I hope I can be part of that level of care for others too. I'm more extroverted on social media, and so I have a better chance that I might be part of the helpful people with a simple like or words of wisdom.

    If you're likely to engage, is it in public or via the back channel?

    Mostly public, unless the person then contacts me via back channel. I respond with the same level of disclosure the person offers.

    - Facebook.com/revdebmatt
    - @revdlm
    - suddenlybipolar.wordpress.com
    - Deb Matthews

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