It’s Okay To Say "I Don't Know"
I recently heard in a lecture at a medical conference that it is okay to say "I don't know." This was in response to a physician not knowing why symptoms may be happening. I think there is a fear for a physician to communicate with a patient that they may not have an answer.
I think it would actually be preferred that a physician say, "I don't know" than make excuses or be critical of the patient. The line that drives me the most batty is, “maybe you have not been compliant with your medications." That one really irks me! I do not know many people that are signing up for daily prednisone, so perhaps we could take a pause and understand that patients are also making sacrifices and we also don’t know.
Frustrating physician-patient communication
I can recall discussing trends or symptoms with my asthma specialist and they have said, “I am not sure why." The challenge that I find with this conversation is that the phrase "I don’t know" automatically shuts it down from going any farther. There goes the conversation! It is suddenly at a standstill, with mixed emotions, broken hearts. I can remember being disappointed that there wasn’t even an inclination of what it may be or how to manage the "not knowing." I think managing this type of news is the piece that is usually missing.
What would you want to hear or how could you co-design these kinds of conversations? What factors could make them better?
Finding solutions together
A few things that I have thought about are maybe not to focus on not knowing, but crafting a plan of how we can figure it out together. A lot of the "figuring it out" may involve research that will take several years or maybe a lifetime.
Is there a way that you can set smaller goals? For example, maintain periods of being symptom-free, on less oral steroids, improving trigger exposure, or even trying something new. Perhaps there is a treatment option that you need to reconsider or even a lifestyle modification that you have been scared to consider.
Managing physician expectations
We may need to manage our expectations regarding how appointments may go. As patients, we may have to be resilient when communication with our physician may progress in a direction we were not hoping they would.
With a previous specialist, I found that we were not on the same page. I think this greatly affected how we worked together. I realized too late that we didn’t have close enough shared goals and values. This was the first problem.
The second was that I expected so many things to be handed to me--they just weren’t with this physician. I had expected information, an advocate, and--at times--compassion. While I learned a lot from that experience, I hope to never repeat it again. I suppose this is why I try to be on top of getting what I need as the patient.
When I think of my expectations now, they are to have accurate information, to be looking forward, to manage symptoms the best way that I can, also to be on the least amount of oral steroids possible. I want to know that I have done everything to improve my quality of life and asthma care.
Have you ever gotten "moon face" as a side effect of prednisone?