Why I’m Glad I Spoke Up About Tardive Dyskinesia

I didn’t realize I had a movement disorder until it was staring me in the face.

Looking back, the signs were there as far back as 2001. At first, it was subtle. A small tremble in my fingers. An occasional twitch in my face. I chalked it up to nerves, stress, maybe even fatigue. It’s easy to explain things away when you don’t want to believe something could be wrong.

But as the years went on, the movements became harder to ignore—at least for other people. Friends would ask if I was okay. Acquaintances would give me concerned looks. Strangers even stopped me in public and asked if I was on drugs. Still, I had no idea what they were seeing. To me, everything felt normal.

It wasn’t until my mother stepped in that I truly began to understand what was happening. She looked me dead in the eye one day and said, “You can’t feed yourself without dropping food. You shake too much. This isn’t okay.” And then she said the words that changed everything: “I’m going with you to your next appointment.”

I’d been seeing the same psychiatrist for 15 years. Not once had she mentioned the movements. Not once had she asked if I noticed anything strange or explained that the medication I was on could cause side effects like this. It took my mother being in the room, asking tough questions and refusing to be brushed off, to make my doctor take a closer look.

What was supposed to be a quick check-in turned into a two-and-a-half-hour discussion. Eventually, my psychiatrist referred me to a neurologist, though she still didn’t give me a clear explanation of what could be causing the symptoms. It felt like a handoff, like she wanted it off her plate. But it turned out to be a blessing.

The neurologist I saw happened to be part of a clinical trial for a medication designed to treat something called tardive dyskinesia. That was the first time I’d heard the term. But it wouldn’t be the last.

He explained that the hand tremors, the head bobbing, the twisting in my torso, even the biting of my own tongue—all of it was tied to this condition. It was like a light came on. Suddenly, years of confusion and frustration had a name. I wasn’t imagining it. I wasn’t being dramatic. I was living with something real.

And I’m one of many.

In the Black community, we often don’t get diagnosed properly—or we’re dismissed entirely. We’re more likely to be prescribed older, more aggressive psychiatric medications. And we’re less likely to be warned about the long-term side effects. That’s how people like me fall through the cracks.

What hurts the most is that it took someone else—my mother—to make sure I was heard. And while I’ll always be grateful she did, it makes me wonder: how many of us are suffering in silence, thinking it’s just something we have to live with?

What Is Tardive Dyskinesia?

Tardive dyskinesia (TD) is a movement disorder caused by long-term use of antipsychotic medications, commonly used to treat mental health conditions like schizophrenia, bipolar disorder, or depression. It leads to involuntary movements—especially in the face, mouth, hands, and torso.

The symptoms may include lip smacking, tongue thrusting, jaw clenching, jerking arm or leg motions, or twitching in the shoulders and neck. These movements are often out of the person’s control and can worsen over time.

TD affects an estimated 600,000 people in the U.S., and Black Americans may be at greater risk due to overprescription of older antipsychotics and lack of access to equitable mental health care. While there’s no cure, there are FDA-approved treatments available—and early diagnosis makes a big difference.

If you or someone you love is on antipsychotic medication and notices new or unusual body movements, don’t stay quiet. Ask your doctor about tardive dyskinesia and advocate for a proper evaluation. Speaking up might just change everything—like it did for me.