Do NOT drive yourself to the E.R. in mid-heart attack!

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by Carolyn Thomas    @HeartSisters

I don’t know why this even needs saying, but apparently it does. People talking about heart patients with severe chest pain (or offering advice to heart patients with severe chest pain, or speaking onstage at Stanford University’s Medicine X conference showing this dreadful slide about heart patients with severe chest pain) must never – and I do mean NEVER – even hint that patients should drive themselves to hospital while experiencing “severe chest pain” unless you are “too dizzy to drive yourself”. 

REALITY UPDATE: I am posting this slide as a warning to others about giving bad advice, not to offer an opinion on hospitals that invest in patient communication tools, unless you are the hospital responsible for sending out that boneheaded text on the above slide.

Continue reading “Do NOT drive yourself to the E.R. in mid-heart attack!”

“Us” vs “them”: the under-served patient speaks up

by Carolyn Thomas  @HeartSisters

I asked permission to republish this letter written by patient advocate and health policy attorney Erin Gilmer, who’s now living in poverty brought about by debilitating chronic illnesses.

Erin offers a unique patient perspective in this letter to the organizers of the annual Medicine X conference at Stanford University.  After writing her letter, she was subsequently invited to speak at Medicine X 2014.  Although not well enough to travel to California in person after recovering from spinal surgery, she was thrilled when Medicine X organizers offered to put together an edited recording of her presentation to be shown to both live and online audiences on September 5th, 2014. You can watch it here.

“Dear Medicine X Conference organizers,

“Your upcoming healthcare conference forum on under-served populations brings up a concern for me that I hope you will consider in the next few months.  The best way I can explain my concern is through this example:   Continue reading ““Us” vs “them”: the under-served patient speaks up”

“I went from the driver’s seat of my life to the trunk”

by Carolyn Thomas  ♥  @HeartSisters

On the day that her doctor confirmed her diagnosis of Multiple Sclerosis (MS), Jamia Crockett recalls feeling “very removed” from her patient experience. Her response, in fact, is one  that many patients living with any form of chronic, debilitating and progressive illness will find familiar – no matter what that ultimate diagnosis may be.

When the doctor told Jamia: “You’ve got MS”, she felt so removed that her first reaction to hearing these two letters was: “No, I don’t have an MS, I have an MHA!” (referring to her graduate degree in health administration). 

Continue reading ““I went from the driver’s seat of my life to the trunk””

‘Healthy Privilege’ – when you just can’t imagine being sick

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by Carolyn Thomas   ♥  @HeartSister

Have you had the experience of knowing something intuitively, but without realizing that the thing you know already has a name?  For example, have you ever found yourself limping along on the losing end of an argument, yet  only much later (when it was far too late!) you suddenly thought of just the perfectly witty retort that you should have come up with? 

There’s a name for that. The French call this l’esprit d’escalier’, literally “the wit of the staircase”.  You’re welcome.

Similarly, I’ve been writing for some time about my niggling frustration over something else that I didn’t even realize had an actual name.  Continue reading “‘Healthy Privilege’ – when you just can’t imagine being sick”

When the elephant in the room has no smartphone

by Carolyn Thomas  @HeartSisters

Shortly after arriving at Stanford University School of Medicine to attend the conference called Medicine X (“at the intersection of medicine and emerging technologies”), it hit me that I didn’t quite belong there. Maybe, I wondered, the conference organizers (like the profoundly amazing Dr. Larry Chu) might  have goofed by awarding me an ePatient Scholarship – rather than a more tech-savvy, wired and younger patient in my stead.

Please don’t get me wrong – I was and still am duly thrilled and humbled to be chosen as one of 30 participants invited to attend MedX as ePatient scholars, generously funded by Alliance Health based on meeting selection criteria like “a history of patient engagement, community outreach and advocacy”.

But almost immediately, I started feeling like a bit of a fraud.  Continue reading “When the elephant in the room has no smartphone”