Living With Dystonia: A Strong Woman's Plea to Strangers’ Reactions to Her Neurological Disorder by Beth Ludwig

Please don’t stare. I know I present unusual. My upper body is in constant motion with involuntary movements in my arms, neck, face and eyes. This is the result of a rarely known neurological disorder called dystonia. Please don’t stare. I perceive judgment from your prolonged looks, eyes surveying my children and me. My mind leaps to the grimmest places during your non-verbal assessment:

• What stories are you writing of a woman you know nothing about?

• Are you wondering if I am an addict displaying symptoms of withdrawal?

• Are you worried about the safety of my children? 

In self-preservation I lock eyes with you and smile, temporarily stalling your stare, but this does little to soften my discomfort. 

I strive to assume good intentions. Perhaps you’re curious about or saddened for a young woman facing physical obstacles. But even my best efforts to readjust my mindset often fall short. Insecurity and shame feel unfamiliar. I have always been a strong, courageous woman caring little about what strangers think. But when you stare, you chip away at my dignity. This is hard to confess, but I can’t be strong all of the time. It’s exhausting.

When you stare, know there is a strong-willed fighter inside an uncooperative body and brain. Consider my grief for what I have sacrificed and lost. Know that the woman at which you stare was a successful teacher and principal for 18 years and has put career goals aside to focus on her health and family. Know that there is a mother, wife, daughter, sister, friend and colleague giving all she’s got to get her life back.

If you’re curious, please name your curiosity. When people have had the courage to do so, they often have asked, “Are you OK?” This honest question at least provides me the opportunity to explain. Engage with me, but please don’t stare.

Learn more about dystonia via WebMD. 

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