my line in the sand

shut it down

I had a number of speaking engagements booked with health conferences when I was diagnosed with breast cancer two years ago.  These gigs are scheduled by organizers many months in advance.  As the mom of a kid with a disability, I had a burgeoning career as the family voice or the inspirational speaker for health care crowds.

After I got cancer I cancelled all my talks.  The reason at the time was that I had no idea what kind of shape I’d be in during or after my treatment.  I didn’t even know what my treatment would entail until after my surgery.  The unspoken reason was that I didn’t even know if I’d be alive to fulfil my obligations.  Cancer, especially at the time of diagnosis, felt like a death sentence to me.

When I popped up a year later, I was quite traumatized but still alive.  I was asked to present about my breast cancer patient experience at a health conference.  I tentatively agreed, but the more I thought about it, the more anxious I got.

This wasn’t stage fright or about being out of practice.  Part of it my reluctance was that I was (and am) still in treatment in some ways.  I have ongoing scans, other diagnostics and appointments with oncologists.  I continue to be angry about the way I was treated – and am treated – in health care.  After great reflection, I turned down this speaking engagement.  The topic of cancer is too close to me.

Funnily (or not), many people in health care who I thought were friends and colleagues ceremoniously dumped me when I stopped speaking at their events.  I don’t know if this had to do with my cancer, or if the only reason they were friendly with me was because I could do something for them.  When I stopped speaking, they disappeared.  I know now that it was naive for me to think they were my friends.  This hurts but I’ve had so many other losses that I’m trying to shake this one off.

My unease with being a patient speaker at health conferences, no matter the topic, boils down to this:  parading out a lone patient speaker feels like tokenism to me.  While my fragile ego loved the attention on stage, I never had any evidence the stories I shared made a difference.  And worse, I was the privileged woman who did nothing more than make the audience comfortable. I had so much in common with the health professionals I was speaking to that I barely pushed the envelope.

I’m university-educated, of moderate socio-economic status and have worked in health care my entire adult life.  That’s why the conference organizers related to me and why I had such a healthy speaking career.  They could see themselves reflected in me.  This might sound fine, but here’s the rub:  I do not and never have represented the folks who are actually sitting in the hospital waiting room.

I feel uncomfortable being the only patient voice, no matter how good it feels to me to be looked at as the patient expert in the room. There must be other people behind the podium whose experiences and lives are different than mine.  I’ve heard a broken record about the lack of diversity in patient representation for years, but this ain’t ever going to change unless us privileged ones hand over the microphone and move the hell out of the way.

I’m opting out of the health conference circuit and sticking with facilitating storytelling sessions with small family groups and guiding staff through reflective practice workshops.  That’s my thing now and that’s what is meaningful to me.

If you are a patient or family speaker and you don’t agree with me, that’s okay.  All I’d ask if you’d consider your own personal intentions behind public speaking so you can draw your own line in the sand.

Lines in the sand can include speaker compensation, or insisting on diverse patient voices or asking that conferences be Patients Included.  If you dig deep inside yourself to find out your own special ‘why’ you share your story, this will safeguard against people using you, too.  Your story is worth it and you are worth it too.

One thought on “my line in the sand

  1. Marie Ennis-O'Connor (@JBBC) says:

    I feel just the same Sue! I actually start off my talks differently now – I say I was asked here to “be the patient story” but I’m here to tell you I don’t want to be the patient story anymore – I want to tell a different story … so for me it’s about standing up on a stage and changing the narrative about the patient story. I really don’t want to tell it anymore.

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