Overcoming My Fear of Tardive Dyskinesia

Published 5/6/2026

Developing psychosis was like sitting in a pot of slowly boiling water. What began as a desperate hope to communicate with my infant daughter slowly twisted into imagination, and eventually into hallucinations.

Because the descent was so gradual, I didn’t recognize myself as someone experiencing psychosis until I was on the brink of my first hospitalization.

I have a family history of psychosis. My uncle is a creative, funny, and kind person who has been in and out of psychiatric hospitals for most of my life. When I was little, I remember running to greet him when he came to visit. He was a videographer for a blues artist and had a fiancée. Though he had experienced episodes of mania and psychosis in the past, at that time, he was stable.

But over time, he began to deteriorate. He had more frequent outbursts and was prescribed antipsychotic medication. As a result, he developed tardive dyskinesia (TD). To a child, these abnormal involuntary movements were frightening. He couldn’t sit still and moved in ways that felt unfamiliar and confusing to me – repeatedly jutting out his chin and constantly moving his mouth. It wasn’t until I got older that my mother explained these movements were a medical condition caused by his medication.

I now understand that TD is a neurological disorder associated with prolonged use of dopamine-blocking medicines used to treat mental illness. It can affect roughly one in four people who take these medications and causes uncontrollable, repetitive muscle movements, often in the face, torso, or limbs – the same movements I witnessed in my uncle.

Years later, I found myself trapped in my own imaginary world, unable to function at home or at work. I was in full psychosis, talking to the made-up characters in my head. I remember saying goodbye, thinking, I can’t live in this world anymore.

When my husband tried to get me to go to the hospital, I refused. I can’t be like my uncle, I thought. If I go to the hospital, I will never live with my family again. I will never work. I will never recover.

Thankfully, my creative and loving husband found a gentle workaround. He arranged for me to see a nurse practitioner at a clinic right next door to the hospital. After some convincing, we walked calmly to the ER together, and that night, I took my first dose of antipsychotic medication.

Finding the right medication for me was a long and winding road, but I did eventually find the right combination, and it includes an antipsychotic. I am happy to report that a decade later, I am still in recovery. For me, that means living happily with my family and working in a meaningful, fulfilling job.

I still experience psychosis at times, but it doesn’t impact the quality of my life. I also have not developed TD. Importantly, I now know what symptoms to watch for and understand that, unlike when my uncle first developed TD, there are treatment and management options available, including medication adjustments and FDA-approved treatments. Knowing that—and knowing I have the right support—means I am no longer afraid.