Fear of being judged is a strong motivator for not speaking up. Sharing a story you are not confident will be well received requires making yourself vulnerable and potentially being challenging to someone in a position of power and from whom you are hoping for care and support. Let's start by acknowledging that this is really hard. And that it can be the most powerful way to puncture the cloud of assumptions that surrounds most patient-clinician interactions.
Someone recently shared the following story through our interactive Plan Your Conversation tool.
1. I want to talk about...
getting a wheelchair
2. It is important to me because...
I need to be able to get around better and do more things, and I think a
wheelchair will help me do that. For instance, I don't go to large medical
buildings, or events at my nieces' schools, because it's too far to walk.
3. It might help you to know...
that even though I appear to be doing ok at appointments, it's because I'm
sitting down and had some quiet space before you came in, there is not
extra noise in here to distract, I decreased how much I did in the days
previous to coming, and I will spend extra time in bed afterwards.
4. I want this conversation to lead to...
a recommendation for a wheelchair fitting.
5. I’m nervous this conversation will lead to...
being told that a wheelchair is not good for me because you are worried I
would do less. However, I think a wheelchair would help me be able to do
A little bit of storytelling can make the assumptions so easy to see. The clinician may see wheelchairs as a mechanism for doing less but for the patient, they could be a way to do more. The version of the patient that sits in front of the clinician during a visit isn't the everyday patient. For those visits, the patient takes care to present their best self, making compromises in other parts of their day to make that happen.
I hope the person that submitted this is able to share this with their clinician and I hope it leads to a rich dialogue in which all the options and trade-offs are discussed. Maybe this person ends up with a wheelchair fitting and maybe they don't, but I can only imagine that a conversation in which this story is shared and truly heard would be one that reflects as least some aspects of careful and kind care.
Our Barrier Cards explore the reasons why patients often don't share the things weighing on their minds or stories about their lives during their visits with their clinicians. Many of the tools and programs developed by The Patient Revolution are designed to help patients and caregivers find their way over these barriers. Do you have a story about a time when you felt judged or didn't share information with your clinician because you were worried about being judged? Tell us.