“We are all patients” … NOT #medx

One of the comments that was made, and repeated several times on the first day of the Medicine X Ed conference I attended last week was “we are all patients”.

This caused me to tweet out:

I had not really thought about the problem with this rhetoric before, but when I heard the statement I felt it. The emotional me recoiled at the statement. I felt that my experiences as someone who has undergone diagnosis and treatment for breast cancer, and someone who is figuring out how to navigate hormone therapy and celiac disease, who has spend the better part of the last year and half attending to two or more healthcare related appointments each week, was discounted as “normal”. My experience was in no way unique or special. Saying that “we are all patients” is saying that the patient experience is something that is normal.

Carolyn Thomas of @heartsisters explains it well in her post: “We are all patients.” No you’re not.

What really struck me though, was that my response to the statement was an emotional one. It wasn’t rational Becky disagreeing with the statement. It was emotional Becky feeling like my experience as a patient had been silenced and discounted. That my story was no longer an important story to be told. I was no longer an epatient ‘expert’.

Of course, academic me knows better. Academic me heard it and saw a parallel to the ‘all lives matter’ argument that is sometimes used to silence the #blacklivesmatter movement. If you are not familiar with what is wrong with the ‘All lives matter’ argument, please read this great article by David Bedrick – What’s the Matter with ‘All Lives Matter’.  It is, perhaps, because I had read that article that I saw the parallel in what was happening at Medicine X Ed.

I’m kind of sad that my tweet didn’t get more favorites or retweets. I think it is important that we stop saying ‘we are all patients’ at medical conferences and within medical education. Unless you’ve experience critical/chronic illness, you cannot even begin to imagine what it means to be a patient.

2 Comments on “We are all patients” … NOT #medx

  1. Prior to heart problems and cancer I assumed such highly trained people as doctors and especially specialists, exposed to so much university level thinking, would somehow emerge intelligent. Or caring? No. The majority are self-involved and are clearly way too inattentive to even model being sick. Why should they anyway? As career-directed wonder-kids where would they learn about things getting beyond their control?

  2. Dear Becky – thanks so much for including a link to my Heart Sisters blog post “We Are All Patients. No, You’re Not”. I too have always felt a twinge of *something* whenever hearing that “we are all patients” line. I suspect that comment stems from what Dr. Ann Becker-Schutte calls “healthy privilege” – because if somebody has never lived with chronic illness and pain and exhaustion or other debilitating daily companions, that person simply has no clue what it’s actually like to actually “be” a real patient, as I wrote in my blog article.

    And, as I also wrote, saying “We are all patients” has often been used by those with healthy privilege to justify NOT including real patients at health conferences. Medicine X is changing that, but it’s also a gathering of outliers. The docs, nurses and health care professionals who are attracted to Stanford are preaching to the choir, a kind of magical thinking experience where patients are included and acknowledged and lauded. Yet last year, there were apparently some rumblings about the “patient voice” being “too loud”. Not literally … Colleen Young at #hcsmca did a tweetchat on that topic. “Has the patient voice silenced others?” https://cyhealthcommunications.wordpress.com/2015/04/28/has-the-patient-voice-silenced-others-balancing-voices-for-better-health-care/

    When I attended MedX on an ePatient Scholarship in 2012, there was a Patient Lounge for those of us who felt too ill to make it through long days at such a fast-paced event, so we could have a place to rest or nap or just find a quiet place to recharge. It was a fantastic and innovative idea. On my last day at Stanford, I was lying on the little cot one afternoon trying to snooze when a non-patient physician ran in and jumped onto the cot next to me, saying in a booming loud voice that he hoped nobody would mind if HE had a lie-down in this room, too. What happened to this special place uniquely for patient’s needs? Now we’re expected to acquiesce that even in a Patients’ Lounge, doctors are patients too??!??! Is the patient’s very identity being co-opted even when we’re trying to have a wee lie-down?

    I agree with you 100%, and thanks for that #BlackLivesMatter link, too.

    regards,
    C

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