In the rare disease community, so much is written about finding people who share your same condition. And while that is indeed valuable, one of the most impactful parts of my MedicineX experience last weekend was how similar experiences are across varying conditions.
That’s not necessarily a positive thing – the undercurrents of frustration, pain both physical and emotional and the strain of chronic illness was palpable in the discussions among ePatients. But what was also overpowering, in a wonderful way, was the strength of an informed, committed and driven health care consumer. I was in awe of my fellow attendees.
There comes a lot of “responsibility” when one is a smart and (relatively) accomplished person with a medical condition. To be an example (of what?), to educate, to inform, to advocate. Depending on my mood I am sometimes all about this and sometimes worn out by it. Approaching MedX, I was a bit fatigued by everything. I was questioning why I was involved in things, if it really mattered. But MedX and the discussions I had and speakers I saw reframed my thoughts.
So… what are my takeaways from MedX? In brief: to be informed, to be engaged, to be persistent. It’s that I have a responsibility as an ePatient to myself, to the Moebius community, and to the ePatient community to push the discussion about care, physician/patient relationships and healthcare as a person with a chronic condition forward.
Moreso, it’s that this conversation is interesting and engaging. That while a string of bad genetic luck might have landed me in this situation and with these experiences, it also means that I sometimes get incredible opportunities from it. And that I should embrace them.