For the Truth Speakers

Recently I was warned a number of times by a health care conference organizer to 'not be negative.'

Alas, real-life health care is full of negative stories from all sides. The only way the system will improve is if we (patients, families, staff) have safe spaces to tell our truths. I reassured the organizers if I had a negative story to share, I would make sure it was constructive and that I'd emphasize practical tips about what I wished had been better.

I've learned the hard way that coming out punching on stage to an audience of health professionals is not the way to get one's point across. People shut down and stop listening to you. Their faces look like a window at the McDonald's drive-thru slowly closing. It is impossible to get them back if you've lost them.

I cannot alienate the crowd if my whole point is to share my messages about the importance of partnering with patients and compassion in health care. But I can and I will tell my truth.

The truth is not always pretty. I've written here about the dark side to being a patient advocate. I've lost jobs, colleagues, income, friendships and opportunities because of my big mouth.

It can be lonely to speak up and stand up for your values, especially in hostile environments. When I talk about how hard it is to be an advocate, I get called a whiner. This is a no-win situation.

Here are some hard-fought suggestions for my advocate friends:

Create safe spaces with other advocates where you can reflect and debrief. Do not forget that is your responsibility to use your platform for good, not evil. Know that meaningful change never happened through cheerleading. Remember that your words resonate further than you ever know. You are planting seeds and may never see the fruits of your labours. That's the power of putting words out there in the world.

Hang onto this one tight: as Audre Lorde said, your silence won't protect you. If you won't speak, who will?