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Why Documenting Stuttering in Medical Records Is Important

A couple of months ago I went for my yearly well visit. On my “after visit summary,” I noticed that stuttering was listed under the medical history section. If that had been on my previous after-visit summaries, then I never noticed it. At first, I found it interesting because I had never disclosed to my doctors that I’m a person who stutters (PWS). I’ve had the same medical team for a few years and they know I’m a PWS; however, I’ve never directly disclosed it to them. Yes, I sometimes wear stuttering-related t-shirts to my appointments, but I never said, “Hi, Dr. Smith. You probably know this, but I’m a person who stutters.” In fact, the only time I disclosed to a medical professional that I’m a PWS is to the paramedics that checked me out after I was involved in a hit and run (I was fine, my car wasn’t).

There are a couple of reasons (or excuses) for why I never told my doctors that I’m a person who stutters. The first is that it’s obvious. I tend to not hide the fact that I’m a PWS and if you talk to me long enough, you’re going to figure it out. The bigger reason was most likely embarrassment. For the majority of my life, I didn’t want to acknowledge or own this part of myself to myself, so why would I acknowledge it to someone else? Over the past couple of years, I’ve gone from being embarrassed about this part of myself to now embracing this part of myself. With that said, I’ve never felt the need to re-introduce myself as a PWS to those who knew me when being a PWS was the last thing I wanted to disclose.

Although younger me would disagree, I’m glad this fun fact about me is documented. In the event something happens to me, my doctors would expect me to stutter and not assume that something far worse is happening. This gives me peace knowing that tests and resources will be spent on those that need it and not me. It also further cements the trust I have in my medical team knowing that they will address what my real issues are and not my perceived issues. However, this isn’t the case for everyone. In a 2014 article by Dr. Lena Wen, we see what happens when a medical team is unfamiliar with stuttering. What was a simple block was treated as a heart attack. Time and resources were spent on someone who didn’t need them all because of a lack of knowledge of stuttering. So, what can we do to prevent the story Dr. Wen told from being told again?

The first step is educating medical professionals about stuttering and other communication disorders. But in order to educate them, we need to have proper and factual information about the disorder. The Johns Hopkins definition of stuttering is the exact opposite of education. To say their definition of stuttering would be a problem is an understatement. Talking to others in both the medical community and the stuttering community, stuttering and how to interact with patients who stutter are rarely discussed. I think it’s important to have these discussions so people know what stuttering truly is and not what Johns Hopkins thinks it is. People who stutter and/or Speech Language Pathologists can speak to doctors, nurses, medical assistants, and other medical professionals. These presentations can be part of continuing education training or new employee orientation. If a live presentation doesn’t work, then a video presentation covering the same topics would suffice.

Following these presentations, medical professionals will have the basic knowledge to identify a stuttering moment, even if the patient doesn’t want to identify with their stuttering moments. This basic knowledge is the key to differentiating a simple block from a heart attack or stroke. In a field where advancements are made on a regular basis, let’s advance how stuttering is understood and treated within the medical community. Let’s see it as just one part of the person and not a problem with the person.

Getty image by The Good Brigade.

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