While meeting with a business client of mine in January of 2009, I experienced my first seizure, a minor seizure causing my body to shudder and an inability to speak for several minutes. What followed from that point was an almost unimaginable multi-year nightmare, one which has been summarized by one person as my "suffering horrendous health problems, insults to (my) dignity, startling erosions of and betrayals in relationships, criminal malfeasance and neglect, etc." and by another as "one man's battle with (a rare disease), misdiagnoses, and mistreatment."
I've documented and continue to document my story in a blog entitled, "My Real Life, Unnecesssary Nightmare" (http://myreallifeunnecessarynightmare.blogspot.com), and I've devoted part of the rest of my life's work to attempting to prevent others from having to experience the nightmare I experienced courtesy of the U.S. healthcare system. To date, this part of my work has largely been limited to writing and speaking about the experience and what about it needs to change and what others can do to facilitate that change. My lengthy piece entitled, "In need of transformation: the patient experience" (http://riander.blogspot.com/2012/02/in-need-of-transformation-patient.html) has been called "required reading for all in the industry" by a leading e-patient advocate. My "A Call to Action Regarding Healthcare" (http://uxmag.com/articles/a-call-to-action-regarding-healthcare) has issued a challenge to the user experience design profession -- my profession -- to move beyond select behavioral tendencies so that they can play a larger role in achieving needed change. Presentations related to this were made to members of the profession in April 2012 in San Francisco (Creative Mornings), October 2012 in Savannah Georgia (Ethnograhic Praxis in Industry Conference), and March 2013 in Boston (Healthcare Experience Design).
A key to achieving needed transformation is understanding the socio-cultural models at play in the U.S. healthcare system. Such models have been the topic of outstanding talks at TED(x) conferences, at Medicine 2.0'11, and at Medicine X 2012. I have high hopes that more about these models will be addressed at Medicine X 2013.
One "new" model trying hard to be at play is peer-to-peer healthcare. Though incresasingly acknowledged as vital to a fully-functional healthcare system, peer-to-peer healthcare has played a minimal role in my story. Identifying needed changes to it to enable it to have played a larger role are also among my interests. Indeed, I plan to create an online community for people who (might) suffer from the rare disease which nailed me.
I can be followed on Twitter via @Riander.