Not Like On TV But Kind Of: My TD Story

05.14.2025

Not Like On TV But Kind Of: My TD Story

by Rebecca Allen

You know those ads on TV or the Internet where a pharmaceutical company shows someone having a rough time with a condition, and then they take the medication they’re advertising and all of a sudden you see scenes of the person frolicking and having a good time with friends and family, enjoying a meal or maybe even diving into a pool or jumping out of a plane? Well that was me. I mean it took a lot longer than the two-minute ad to get well and I wasn’t skydiving, much less plunging head first into a body of water after, but I definitely felt like I got back control of my life.

I suffer from tardive dyskinesia (TD) and the repetitive, uncontrollable movements got bad enough that I needed to go on medication. I had it for about two years before being diagnosed in 2016 so yeah, a lot longer than two minutes but the thing is I had no idea what it was.

I’ve had a mental health disorder since junior high school. I suffered from depression at a young age, acted out at school and had a difficult time emotionally and psychologically, but I didn’t seek treatment until I was an adult. It was around 2013 when I became extremely paranoid, anxious, and couldn’t think clearly. It was so severe that I overdosed on some prescription medication in an attempt to end my life.

Almost 40, a mother of three children–ages 10, 13, and 15 at the time–I was immediately hospitalized. It was the first admission of several over a five-year period. I was diagnosed with schizoaffective disorder (a combination of schizophrenia and bipolar disorder), put on various medications, became unable to work, and was declared disabled.

My TD started with little, almost tick-like actions–odd, repetitive tongue and hand movements which I didn’t notice at first. Someone brought them to my attention and I realized it was happening and became very self-conscious. I began to have difficulty doing simple things with my hands like preparing food, using a knife, counting change, buttoning my clothes, zipping and unzipping things. I couldn’t keep my hands still, even if I tried consciously to do so.

I saw my psychiatrist and she noticed movements in my face, like jaw clenching, and the shakiness in my hands. Through a comprehensive review of medications I had taken in the past as well as meds I was on, and a full examination, she diagnosed me with TD. It’s important to understand that TD is not a symptom of a mental health condition but rather a side effect of some mental health medications and it can become worse if left untreated.

I remember the struggle I had with TD before treatment. I was either extremely exhausted or jittery. I couldn’t find a happy medium. I didn’t realize all that was caused by medication I was already taking. I thought it was anxiety. I recall my doctor asking me to complete a simple enough task at the examination–she asked me to move my tongue. I couldn’t voluntarily control it. That was it. She said there was treatment and I didn’t have to go off any of my mental health medications to alleviate the TD.

Instead we added something. Eventually my psychiatric medications changed for other reasons but I remained on the TD medication and have been doing well for several years. I’ve found support through family and friends, but also other patients with TD. It took me years to assemble, but I now have a great mental health (therapist, psychiatrist, group work) and TD treatment team. I’ve learned to cope with the stress through outlets like walking, listening to music, and surrounding myself with people that help me stay focused.

Since I started the TD treatment, I don’t feel the uneasy feeling I had before. The movements have relaxed and I feel more confident and less embarrassed. Thanks to treatment, I now function at a higher level and I was able to return to work part time. My advice for anyone who might suffer from a mental health disorder, is taking psychiatric medications, and has an “uneasy feeling” about their daily movements is to bring it to the attention of their doctor.

I am sharing my story on ADAA to help others recognize this condition and know there is treatment. I would advise anyone reading this with similar symptoms or feelings to see a doctor about the possibility that your medication could be causing daily uncontrollable movements and that there could be permanent side effects / damage if not treated.

TD treatment has improved my quality of life. My hands are more steady and I have prevented progression of the illness. I don’t think I’ll be jet skiing or skydiving any time soon, but I can do other tasks easier now.