My Body Looked Nervous. I Felt Fine. Could Dysautonomia Explain It?

“I could tell you were a little nervous, but you did an amazing job.”

That’s a kind and supportive text I received from a friend last week after I completed a presentation. I want to say that I was surprised to learn she thought I looked nervous, but I wasn’t surprised at all. I knew I was 

sweating … a lot. I heard my voice shake. 

Yet, I also knew that I wasn’t nervous at all.

The issue, at least in part, is dysautonomia, something I've only begun learning about over the past couple of years. It’s been incredibly eye opening as I see explanations for things I have experienced my entire life. 

I know that I will have temperature issues when I stand so I prepare as best I can. I choose cool clothing and I make sure I’m well hydrated. I make sure to sit and relax in a cool space before I present. If I have any control over the temperature of the room, I make it a bit cooler. 9.9 times out of ten I still find myself sweating. I learned decades ago that this was how my body worked, I just didn’t have a name for it. 

I also knew that my body and my voice would shake at times. Usually I figured I was just extra tired or maybe coming down with a cold. It wasn’t until last week that I wondered if these are also connected to dysautonomia.

I thought back to past times where I felt the shakiness when it didn’t go along with how I was feeling and I realized that it happens at times when other symptoms of dysautonomia appear. It goes along with the sweating and the dimmed vision. 

I'm not a doctor and I can't say for sure that my shaky voice stems from dysautonomia, but recognizing when it happens alongside my other symptoms makes me suspect there's a connection. Understanding the connection won’t stop it from happening, but it does make me feel better. Instead of wondering why my body is always letting me down and making me self-conscious, it’s been helpful to understand that there is something physiologically going on that is beyond my control. It’s helpful to put a name to it and to know that I’m not alone. 

I enjoy public speaking and I’m grateful to have opportunities to share, but because of my issues I do find myself being very selective with my commitments. For some reason, realizing this is an actual known condition has given me more confidence. I plan to keep showing up, standing up, and speaking up. I will try different techniques to help limit the symptoms and I won’t let embarrassment keep me sitting quietly. 

I wanted to write this piece to ask others who experience this if they have any tips that help them. I also wonder if putting names to things helps others feel better about themselves too. 

From the Practice

The autonomic nervous system controls many of the body's involuntary functions, including heart rate, blood pressure, sweating, and temperature regulation. Dysautonomia occurs when this system doesn't function as it should, sometimes producing physical symptoms that resemble anxiety even when a person feels emotionally calm.

Dysautonomia symptoms can include excessive sweating, shakiness, dizziness, changes in vision, and difficulty tolerating prolonged standing. Some people experience several of these symptoms together, particularly when upright.

A shaky voice is not a well-established symptom of dysautonomia, although changes in breathing, muscle tension, or physical tremulousness may affect vocal steadiness. Persistent or recurring voice changes deserve medical evaluation rather than automatically being attributed to autonomic dysfunction.

Dysautonomia can also occur alongside certain autoimmune and rheumatologic conditions, including Sjögren's disease and lupus.

Recognizing these symptoms and discussing them with a healthcare provider can help identify possible causes and appropriate management strategies. Just as importantly, understanding that physical symptoms don't always reflect someone's emotional state can help reduce misunderstandings and encourage greater compassion.

Thank you to the patient who shared this perspective. The Living Radiantly Patient Perspectives series exists to give voice to the real experiences of people living with rheumatic, autoimmune, and chronic illnesses. If you have a story, insight, challenge, or triumph you'd like to share, we welcome your contribution. Together, we can help others feel seen, understood, and less alone throughout Clermont, Florida, and the surrounding communities. Click to submit: https://www.radiantrheumatology.com/patient-perspective