“You don’t have to be a guru, you can be a contributor…” I had never heard of Denise Duffield-Thomas, but what she said resonated with me as wisdom for patient advocates.
I don’t even remember how this item came into my social media feed. I had never heard of Denise Duffield-Thomas, but what she said resonated with me as wisdom for patient advocates.
“You don’t have to be a guru, you can be a contributor. If you really care about a topic, be a contributor. You don’t have to know everything.”
Too often patients (and their caregivers) censor themselves.
They don’t feel qualified. After all most patients don’t have medical degrees or some other kind of formal credential. So, what?
They worry that their knowledge is based “only” on their personal experience. Can the one speak for the many? Guess what, most medical professionals don’t have any personal experience with diabetes, or any other chronic illness or disease, and yet they generalize.
Patients fall prey to the imposter syndrome, that feeling that somehow you shouldn’t speak up. You’re not qualified. When they (whoever “they” is) find out, something awful is going to happen.
The conventional advice for addressing imposter syndrome is familiar. It boils down to remind yourself of your achievements. But what if you’re doing something new and different? What if you’re just starting out as a patient advocate?
That’s the beauty of being a contributor and not a guru.
It totally re-frames your role of the patient advocate. You don’t have to be the expert. You don’t have to know everything. You don’t have to speak for everyone. You don’t have to lead the charge.
Each time I share my views as a person living with diabetes it’s as if I tossed a small stone into a pond, generating ripples of change.
Looking back at 2015, one word comes to mind when I think of my life with diabetes: advocate.
I thought about and discussed advocacy a lot during this past year. Who is a diabetes patient advocate? The patient him or herself? Anyone who cares about people living with diabetes? Where does advocacy take place? In the doctor’s office? On Capital Hill? Which issue is most important to advocate for? Easy and affordable access to treatments and medical devices? A cure?
The answer to all of these questions is “Yes.”
Being an advocate and engaging in advocacy is all of these things, and so much more. Each conversation has the potential to change a person’s view of life with diabetes. Each doctor’s visit has the potential to improve the treatment that the next patient receives, and the next, and the next… Each letter written has the potential to influence the work of policymakers.
It’s as if every time a person speaks up for the rights and needs of people living with diabetes a stone is tossed into a pond, generating a ripple of change.