“It’s Not Your Fault”: The Power of Being Seen

This article is part of an ongoing series illuminating the lived experiences of narrative practice in action — where listening, meaning-making, and empathy transform everyday encounters.

----

By Lynne Schwartz

Lynne Schwartz is a communications professional and the Program Coordinator for Advocate Health’s Narrative Medicine program. Living in West Chicago, Ill. with her husband, Jeffrey, she is also the mother of twins, Haley and Ryan, 25. Haley, as a result of her lifelong challenge of living with a chronic illness, Dysautonomia (a condition that causes dizziness and fainting), founded Vertige Adaptive, a fashion-forward adaptive wear brand catering to people with different health conditions and disabilities. The clothing is designed for people who need clothing to accommodate medical devices such as heart monitors, ostomy bags, feeding tubes, insulin pumps, central lines, PICC lines, and ports.

I walked into the dentist’s office with my nerves on high alert. My 25-year-old daughter, Haley, has a chronic illness which includes vertigo, so I am often her chauffer. That day, I was also her moral support.

Haley is not a great patient; her disdain for having dental work done is born from her experiences. Her condition makes the entire process very difficult: lying on her back can make her vertigo worse; she can’t have many anesthetics due to a previous heart arrhythmia; and having people do dental work in her mouth increases her ever-present nausea. Haley has been “fired” from at least two other dentists who no longer wished to treat her. Considering she had a lot of cavities, we had no choice but to try again.

Haley sat nervously in the chair and explained her concerns to the dental assistant, who kindly explained that she also suffers from bouts of vertigo and would work to make Haley as comfortable as possible. (Small exhale.)

Four Words That Lifted the Weight

The dentist came in and went through a more-detailed health history with Haley and could see from previous x-rays that she had 12 cavities that needed to be filled. Haley went on the defense and started to explain that, while she brushes and flosses regularly, nothing seems to help. The dentist was somewhat familiar with one of her conditions, Ehlers-Danlos Syndrome (EDS) and, after a quick exam, said, “Haley, this isn’t your fault.” She said that she could tell that Haley takes good care of her teeth, explained that EDS is often associated with a higher level of tooth decay, and suggested that chronic dry mouth could be contributing to the cavities. (Bigger exhale.)

The rest of the appointment was spent coming up with a plan to get the cavities filled and suggestions on how to possibly prevent new ones. She reassured us that she would work at Haley’s pace and stop if she became too uncomfortable. (Huge sigh of relief.)

Haley went into the next appointment more relaxed, and pleasantly surprised. Just as important as what this dentist did do (treat Haley with patience and empathy) was what she DIDN’T do: treat Haley as though this were her fault. She even told Haley that she had done more research on EDS to try and understand how she could better help her. We have not been able to thank her enough.

"Set that down"

While I can’t say Haley will ever look forward to going to the dentist, there is a weight that has been lifted. As someone who has been on this journey with her, I see that too often she is unknowingly asked to carry the burden of illness and guilt in order to make life more comfortable for others. It is when someone allows her to “set that down” that you realize how heavy it had truly become. It’s amazing the power that four little words – “It’s not your fault” – can have.