There are times when I find the label "expert" annoying. Usually we think an expert is someone who has spent years and years in academic study, maybe conducting research and focused on a problem.
But from a medical perspective, why is the person who is living with the problem day in and day out NOT considered an "expert?" Do they not have direct and firsthand knowledge of what they're experiencing?
So great to speak with Clive Phillips live from #NewZealand about this and other topics as it relates to my own long and winding journey with #MultifocalMotorNeuropathy or #mmn (a super-rare but often treatable #autoimmune condition). Clive has indeed made lemonade with the lemons he was dealt, creating a #podcast to raise awareness about MMN as well as a launching a cross-country bike tour to generate funds for research called #MakingtheMostofNow (MMN, get it? 😉 ).
This is just a taste of our discussion which includes:
My journey to #diagnosis (nearly 7 years)
Power dynamics in #patientengagement
Disrupting the health care system
How to be #PositivelyPersistent
And why I'd rather have a doctor with high EQ or #emotionalintelligence than IQ.
Though not all my work is in patient engagement, my own experience is one of the reasons I'm so passionate about this work when I am fortunate enough to get to do it!
Full podcast on Spotify.
Also available on Clive's website where he tracks his cycling activities as well (I just like Spotify better to listen to on my phone).