Stammering in my medical records

24th November 2021

James Hayden, our regular Your Voice contributor from the U.S., tells us how a routine visit to his doctors made him think about how much medical professionals know about stammering, why it's important and how it could be improved.

A couple of months ago, I went for my yearly 'well visit' (this is what we call a medical check up here in the U.S). 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. I've had the same medical team for a few years and they know I stutter; however, I've never directly disclosed 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 stutter was to the paramedics that checked me out after I was involved in a hit and run (I was fine, my car wasn't).

For the majority of my life, until now, I didn't want to acknowledge or own this part of me to myself, so why would I acknowledge it to someone else?

There are a couple of reasons (or excuses) why I never told my doctors that I stutter. The first is that it's obvious. I tend to not hide the fact 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, until now, I didn't want to acknowledge or own this part of me to myself, so why would I acknowledge it to someone else? Over the past couple of years, however, I've gone from being embarrassed about my stutter to now embracing it. With that said, I've never felt the need to re-introduce myself as a person who stutters to those who knew me when it was the last thing I wanted to introduce myself as. 

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Although the younger me would disagree, I'm glad this fun fact about me is documented. In the event that 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 more. 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?

education

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 them. Some of the definitions of stuttering given on the websites of various medical schools are the exact opposite of education. For instance, one institute defines it as 'a speech problem'. My issue with this is that it is saying that it's bad to stutter and it must be fixed. When in reality it's OK to stutter and it's how we view stuttering that needs to be fixed. 

Another issue I have is the use of the word 'symptoms' when describing stuttering. To me, using this makes stuttering appear to be this terrible medical condition as opposed to a way some people talk. A better word choice would be 'signs' instead of symptoms.

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.

Definitions like these give doom and gloom and appear to be written by people who know very little, if anything, about the topic. They portray stuttering as a terrible reality and give little hope to the parents of kids who stutter. If this is all a medical professional knows about stuttering, then how can we expect them to interact with their patients in a positive way? 

How to interact with patients who stutter is rarely discussed in the medical community. I think it's important to have these discussions so people know what stuttering truly is. One way to do this is have people who stutter and/or speech & language therapists speak or make presentations to doctors, nurses, medical assistants and other medical professionals. This 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 does not want to identify with them. This basic knowledge is the key to differentiate a simple block from a heart attack. 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.

What do you think? If you'd like to write an article giving your opinion on anything stammering-related, or if you want to share your story, email editor@stamma.org and we'll give you more information on how to write for the site.

Read more articles from James.