oh, the activated patient?

welcome to medicine x, a conference about bridging developing technology for health, patient perspective, and healthcare providers insights!

guaranteed to make you feel simultaneously warm and fuzzy AND activated and pumped (not a diabetes pun) AND frustrated AND …. (here’s the bell ringer)… SUPER-DUPER.

today during a session called ‘the new pharma,’ an image popped in my mind and mike brought it to life superbly. exactly. to the tee.

mike lawson’s beautifully hilarious visual:

activated

during this panel, i was overwhelmed by a sense that there were varying perceptions of the people sitting at the front. the ones in the white chairs.

us. the patients. the, activated, patients. the people recording and analyzing your words as you speak on stage. waiting for gold nuggets and lumps of obsidian.

to many, we are heroes here.
we are representing our patient populations to move health care and technology to a place more centered on the end-user, to a place more centered on… us. we enact change, far beyond our own reach, for the better.

BUT

to many, we are monsters here.
we come in an stir shit up. we demand changes. we lay down imperatives for inclusion and partnership and inclusion and inclusion and inclusion. we gather our own data and take up extra clinic minutes without paying more to get an analysis. we hack our devices, we correct you when you’re wrong. we speak up. every. time.

today, i felt parts of the monster within myself.
today, i felt parts of the hero within myself.

today, at medX, this new dimension (let us call it gol.D-socks) of being an activated patient became clear to me

do too little to self-manage and my doctor feels like i’m a lost cause and thus, a burden
do too much to self-manage and my doctor feels like i’m stubborn and thus, a burden

do just the right amount to self-manage and my doctor feels like she is helping, and i am too.

if i villainize my doctor because my diabetes advocacy wheels won’t stop turning, she will villianize me.

truth?

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10 thoughts on “oh, the activated patient?

  1. Truth.

    It’s difficult to find the balance between showing appreciation for what we’ve got, and demanding that things be made better. If I knew how to achieve that balance, I’d tell you…but, alas, I don’t.

    Brilliant concept and brilliant writing, as always.

    • Balance is the ideal word for this post, Scott. Thank you. It’s a balancing act for each of us individually and for us as a collective I think. As with what happened with Mrs. Manners, it can be easy for us to bear our talons. Thank you for reading and sharing your thoughts.

    • I ask myself that question all the time. Especially as I gear up to find a new doctor. Do I come right out and say, “I write a diabetes blog, am an advocate, and I know my shit” or do I let that come out over time? That is another question trap I get myself into. I would LOVE to hear more about your question from you, Sara. Thank you for reading ❤

  2. I’ve been thinking about this since I first read it, and I don’t know if I really have anything meaningful to add. Except that there is a certain level at which we should be engaged in our care, and our HCPs should be engaged in our care, and neither of us should stop until we get there. But it doesn’t really serve the greater good if anyone is demonized in the process.

  3. Pingback: So Many Things! - Six Until Me - diabetes blog

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