At last count, my chronic and recurring conditions sit at 13. Unless I tell them, no one would know I have even one. Every chance I get, I drag the experience of all these conditions into the spotlight through networking and conference participation because I hope that representing patients through my own experiences will help decisionmakers and innovators keep us in mind as they attempt to fix our broken healthcare system. I don’t think I have ever not been the only patient voice in the room.
At one conference I attended recently, there was a cool little feature that allowed attendees to network 1:1 for a few minutes. I really enjoyed it, and it was unexpected since the conference was virtual. In one of the sessions, the randomizer paired me with a pediatrician. I liked her. She had said some interesting things during one of the breakout sessions. I mentioned, almost offhand, that it was difficult to pipe up sometimes as the only patient voice, and sometimes I am not sure how contrary to be.
Her response was that I should remember that many of the people in the room had patient experience, as well. Her tone was a little patronizing, and our four minutes were ending, so I didn’t say, “Yes, but you don’t represent yourselves that way.” And since they don’t, it’s only one or two small voices trying to make sure patients’ interests are represented.
In truth, I do know that. I am always repeating the Ford Foundation figure that nearly half of all Americans have at least one chronic or autoimmune condition, and that doesn’t include the healthy caregivers with their own valuable experiences. Usually, I think about that in context of “what a great voting bloc we would make if we decided to mobilize”, but it also sits in my head that when I am meeting new people, every other one -- half of every couple, half of every group at the 4th of July parade, half of all graduating seniors -- have their own patient stories to tell.
Or not to tell.
I get it. It’s hard exposing our vulnerabilities, and both physical and psychological conditions count. After a lifetime of hiding my own story in plain sight, it felt like swinging over a ravine on a little tiny vine to launch a public blog where I would be laying everything out for whomever happened upon my page. It flies in the face of our deep desire to be perceived as normal, and when someone does put themselves forward, there is always the fear that everyone from your colleagues to your closest friends will look at you differently. And it is a risk, a serious one. There is the risk of discrimination, which is illegal but difficult to prove. For those in the healthcare space, it has the potential of damaging professional credibility, and making people question motives.
It also has the potential to add thousands of pieces to the healthcare puzzle. It’s great to bring healthcare experience to healthcare solutions in quiet, individual ways, but no one else can feel empathy or gain understanding during the greater discussion if stories are kept to the individual self.
So, I am going to ask, specifically of my fellow invisible condition patients inside the healthcare ecosystem: when you are working to find solutions to our most challenging healthcare issues, please consider sharing your own patient and caregiver experiences with the group. So many of us are driven and passionate because of those experiences, and nothing creates a sense of community like finding common cause. But without the context of patient and caregiver experience, there is no common cause, just stakeholders, and stakeholders are sometimes at odds. That sense of community would help us build bridges and find consensus.
It's a risk, but you might be surprised at the rewards.