Taking time to listen: meeting a tardive dyskinesia patient
Taking time to listen: meeting a tardive dyskinesia patient
Movement disorders such as tardive dyskinesia (TD) are neurological conditions that profoundly affect patients and their caregivers. Typically arising as a side effect of prolonged use of certain medications such as antipsychotics, TD is characterized by repetitive and uncontrollable body movements.
Teva is at the forefront of addressing this condition through extensive research, development, and patient-centered initiatives. Through platforms like Life Effects and awareness-raising patient symposiums, we share stories from patients and carers about the reality of living with various health conditions and receiving support.
At a recent patient symposium for Mental Health Awareness Month, we talked to Melissa, who is living with TD. She says: “My facial and mouth movements made it difficult for me to smile and caused me to isolate myself. The symptoms were noticeable both to myself and to others, which helped lead to an earlier diagnosis. Learning that TD was a permanent condition made for a very difficult conversation with my doctor.”
How was the process of diagnosis?
When I was initially diagnosed with TD, it was scary. I had heard of TD but didn’t know what it was. Because of research, I could have a productive conversation with my doctor right away. I was worried I’d have to stop the medication that kept me stable, but thankfully my doctor was knowledgeable and helped me find a way to stay on my regimen. They looked at my whole health picture and guided me with compassion.
What challenges did you face afterwards?
One of my biggest challenges was that my work involved being around people all the time, and I was always smiling. With TD, I couldn’t smile. That really hurt my self-esteem and led to a lot of isolation. I love going out to eat with friends and family, but I had trouble eating and drinking in public. It made those social situations nearly impossible. I had to find new ways to feel confident and manage that sense of isolation.
How did you navigate the healthcare system?
There are different treatments out there for TD. I tried a few before finding one that worked. The biggest thing is having honest, open communication with your doctor. That helped me the most.
What self-care strategies do you use?
I have lots of wellness tools. Baking, playing with my pets, dyeing my hair fun colors. I do those things daily to help with my self-esteem. Wearing bright, bold clothes helps too, people notice my hair or outfit instead of my facial movements. Talking to others with TD has been healing for me. It made me realize I’m not alone, and it empowered me to become an advocate.
Have you encountered any misconceptions about the condition?
A misconception I’ve seen is that people with TD or other mental health conditions should have lower expectations. And when that happens, people stop setting goals for themselves.
I was told I’d live in a group home forever, that I’d be on disability and never have meaningful relationships. But that’s not true. I’ve proven all of that wrong.
I had people who believed in me and helped me see what was possible. Not everyone has that. We need to do better for others who don’t get that same support.
How can healthcare providers help?
One thing that would help providers is more access to the kind of research I had to do on my own. I brought information about TD to my doctor. It would be better if they already had it and could recognize it sooner.
What would you say to others who have this condition?
I want to say there is hope. It’s easy to give up when treatment isn’t working, but don’t. Keep trying.
This is actually the first time I’ve spoken publicly about my TD diagnosis. It was harder for me to talk about than my mental health diagnosis, because TD felt so out of my control. None of my tools worked. Only medication helped.
It took a while to find that balance, and even if I stopped taking my meds, the symptoms didn’t go away. But I kept working with my doctor to figure out what worked for me. Everyone’s path is different.
Why we at Teva believe this work is so important
“One of the things we get to do in our role, which is such an honor and a privilege, is work with some fantastic advocacy organizations that support mental health, including people living with tardive dyskinesia and schizophrenia”, says Michelle Roberts, Head of Medical Patient Advocacy at Teva.
Meet Matt who is living with schizophrenia and his mother Susan who is part of his carers’ network
NPS-ALL-NP-01629-September-2025
