Walking a Fine Line as a Squeaky Wheel: Communicating With Doctors

I once told someone about their healthcare, "You have to be the squeaky wheel." Later, I was corrected by a provider with the disclaimer that being a squeaky wheel can cause doctors to take a patient less seriously and to overlook their "squeaking."

Those words still echo in my ears, rolling around in my mind. I felt undermined and scolded, but of course, I knew what he meant.

As a well-seasoned rare disease patient and advocate for myself and others, I'm aware of the fine line one must walk to stay heard and not ignored – from lack of self-advocacy or overuse of advocacy.

However, if someone with less advocacy experience heard that I'm afraid, then the message they takeaway could become, "Don't be a squeaky wheel, or you'll be overlooked."

How do I walk the fine line?

In a nutshell, I walk the line by knowing what my tolerance level is, choosing my battles, and using diplomatic, intentional communication.

I communicate with some doctors frequently and others sporadically. This depends on the medical issue and the doctor's area of expertise. It also depends on what I find manageable or tolerable. I don't expect to be symptom-free, but I do have a threshold for symptoms or issues I am willing to tolerate and for how long.  

Active and intentional communication

If my symptoms are tolerable, I still let my doctors know they're occurring, but I'm not on high alert to actively push for their resolution, especially outside of medical appointments.

However, if I'm struggling with symptoms that I'm not tolerating well – and especially if we know there's more that can be done to improve them – I'm not waiting until my next appointment. I'm following up by phone or my online patient portal.

When I reach out, I clearly describe what my medical issue is and ask for help with it, either by stating what I would like to do about it or specifically asking for guidance. I ask my doctors for their diagnostic opinion about why X is happening, what it could be or mean for me and my health conditions, and whether it is something that can be treated more effectively.

I've noticed this helps bring the issue to the forefront and requires my doctors to actively think about it. It also helps me better understand what's happening in my body and what to expect because of it. I've learned that if I don't ask a specific question when I'm seeking an answer, information gets overlooked and isn't communicated to me. By communicating intentionally, I reduce the information burden that medical providers receive and sort through, and my doctors have learned that when I'm asking for help, I need help.

How I handle disagreement

When my doctors don't believe there are any other treatment or testing options available, if I don't agree with their assessment, I ask to discuss it with them in further detail so that I can gain a better understanding.

I also discuss what others in the rare disease community have shared about their experiences and treatments for similar or the same issues, as well as what I've found by reading medical journals or what my other doctors may have suggested. In this way, I can ask to try something different, and if it's not a viable option, my doctor can explain why not.

Building rapport and setting expectations

Figuring out where the line is can take time. So does settling into and understanding a relationship built with your provider. Open and honest communication with the provider or care team can be helpful to build rapport and feel more comfortable and knowledgeable about how the patient-provider relationship works with them.

For example, I felt awkward with one of my doctors and their follow-up process regarding labs for possible treatments. I had set the same expectations I have with my other doctors with this specific doctor and care team. I felt confused, insecure, and uncertain about where the line was.

I finally decided I needed to ask them how they wanted me to approach lab follow-ups, and it helped dissipate all of my concerns. Now, I know what they expect of me if I want to know something, and I know how to better navigate my care along the fine line of advocating for what I need with their team. Asking a direct question with respect took all the guesswork out of everything for me, and I feel much more secure in our patient-provider relationship.

Can you relate to this feeling of walking a fine line? Do you have any experiences of navigating communication expectations with doctors or healthcare teams? Tell us about your experiences in the comments below!