The Day I Noticed My Tardive Dyskinesia Symptoms for the First Time

Tardive dyskinesia (TD) is an involuntary movement disorder that can cause abnormal movements of the face, trunk, arms, and legs. The movements can be either rapid and jerky (chorea) or slow and writhing (athetosis).01 TD can develop as a side effect of neuroleptic (antipsychotic) medicines. Since the movements are involuntary, people with TD aren’t often aware they’re showing symptoms until someone draws attention to them. In many cases, patients may not even know they have TD.

Bethany Chalmers was diagnosed by her psychiatrist, but it took her nine-year-old nephew asking about her facial movements to make the penny drop. From the mouths of babes, as they say...

Five years ago, I was working part time as a caregiver at a group home for disabled adults in Maryland, USA. At that time, I had been married for two years.

During a routine check-up with my psychiatrist, I was diagnosed with tardive dyskinesia (TD). It came as quite a surprise. I wasn’t looking for an additional diagnosis, and at that point, I had never even heard of the condition.

While others noticed my TD symptoms, I didn’t

At the time, my TD symptoms were relatively mild and confined to facial movements such as blinking and pursing my lips. This was only noticeable to others or would have been if I had caught myself in the mirror at the right time. That said, I didn’t notice the symptoms then, and five years later, I still don't – even when looking in a mirror. I think that is because I can suppress the symptoms briefly when I’m paying attention - unless I’m under a lot of stress.

My doctor had to explain to me what TD was. But at the time, I didn't really understand what the news meant. The moment that diagnosis really sunk in was at a family birthday gathering. My nine-year-old nephew was sitting across from me at the table, and while we were waiting for the meal to be served, he asked me why my mouth was moving like that.

Kids are more likely to say what they think, as they don't have the same filters adults do. He wasn't being rude – he was just curious. It was then I realized that if he noticed enough to say something, then others probably noticed, too. They were just too polite to mention it.

I’m only embarrassed by TD when others draw attention to it

I don't remember what I said to him at the time, but I do remember realizing that people noticed. It made me feel self-conscious. Even though the movements were entirely out of my control, I felt slightly embarrassed. I don't usually explain my condition to people even now – five years later – whether they are family, friends, acquaintances, or complete strangers.

And yet, I’m willing to talk about TD on local news and social media. Go figure. 

I have other symptoms, too. The one that's most noticeable to me is my twitching, dancing feet. If I'm not paying attention, I can accidentally kick people under the table when seated at a restaurant. To combat this, I twist my feet around the table legs to stop them from twitching out of control. It's not a huge deal, but it’s embarrassing having to explain to someone you barely know why you were apparently playing footsies with them under the table. Most people's limbs don't involuntarily twitch during casual conversation.

I don't usually share my diagnosis with people when this happens unless they are family members or close friends. Most of the time, I'll just offer a short apology. 

While TD is a constant in my life, I don't think my involuntary movement has affected my work or social life too much. My initial diagnoses of a bipolar disorder and anxiety are far more likely to get in the way of my life.

Resources

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   Daniel Tansy, MD Tardive Dyskinesia - Symptoms & Definition RareDiseases.org

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