Attending to my needs amid the stress of a medical conversation
Why I asked for a pause when trying to comprehend what I was hearing
As I stared at my fists gripping the steering wheel, I realized my muscles could not squeeze any harder. There was an absurdity here. I was white-knuckling my steering wheel, and my car was in park.
The call that had sparked this reaction was still in progress. The medical professional on the other end was going over test results for our youngest daughter, and the complexity of what she was saying had blended into a hum. I was trying to understand the results while the voice explaining it all sounded like the teacher from a Charlie Brown cartoon.
At this point, we were only a year into the diagnostic odyssey for our then 5-year-old. Trying to figure out why systems in her body were failing her had sent us into a free fall. Almost three years would pass before we learned she had Friedreich’s ataxia. At the time, we were being seen at new specialty clinics, which meant new tests, new concepts, new systems, and new medical professionals I was trying to understand. At that moment, it wasn’t going well.
Have you ever found your brain just shutting down, unable to come up with a response or a well-developed train of thought in a stressful moment? I hate that feeling.
In the past, I would’ve viewed that experience as a personal shortcoming. I don’t anymore. Years of training in trauma-informed care as a social worker have shown me that this experience is the beauty of the brain: It’s trained to shut down complex thoughts in stressful situations so it can focus on survival, turning on the fight, flight, or freeze section of our brains (also known as the limbic system).
This part of our brains is fantastic for survival in the face of danger — but not the best for conversations about medical care.
Handling the stress of medical news
There are lots of ways to help put the limbic system at rest and get our thinking brains back online. I’ve used breathing, mindfulness, and grounding techniques. I’m also a big fan of laughter and fun as ways to help lighten the situation. But my favorite tool by far is movement. Walking, running, biking, scooting, or driving help clear my brain the best.
In contrast, nothing will trigger my stress like a conversation about the health or safety of my two daughters. Not only is this understandable, it’s also biological. We’re hard-wired to ensure the survival and well-being of our children. When a disease like Friedreich’s ataxia arrives on the scene, it’s both understandable and expected that caregivers will struggle to stay calm.
When medical providers use complex language that’s outside a layperson’s understanding, or when providers are pressed for time or having a hard day, the opportunity for the conversation to go poorly expands. And that’s where I found myself while in my parked car.
Clearing my throat, I informed the professional that we needed to pause for a moment. Unable to fully connect with myself, I went textbook, and the words flooded out of my mouth quickly. I explained that this conversation had been triggering, my limbic system had taken over, and I was deep into an amygdala hijack. I explained that I needed a minute to calm down so I could be present and understand this conversation.
I knew the caller had valuable things to tell me. I just needed them to be shared in a way that I could comprehend.
The professional began apologizing. I responded, “Please, give me a minute.”
I exited my car, stood tall, and took a cleansing breath. Reaching back, I grabbed my phone and started to walk. Having recalibrated, I put the phone to my ear and said, “Thank you for giving me a moment. I’m here. Let’s start over because this is important to me.”
One of the biggest keys to building understanding with others is first understanding and caring for yourself. You’re worth the investment.
Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.