Guest blog: 5 things I wish I knew before being diagnosed with tardive dyskinesia

by Jeff, Tardive Dyskinesia Patient Ambassador for Neurocrine Biosciences, Inc.

Nearly 60 million adults in the United States are living with a mental health condition. Some people living with a mental health condition may also develop or already have tardive dyskinesia (TD), a persistent, involuntary movement disorder associated with the use of antipsychotic medication (APs) and characterized by uncontrollable, abnormal and repetitive body movements.

I was diagnosed with schizophrenia when I was 17 years old, after I had a nervous breakdown and was hospitalized for a few weeks. My psychiatrist prescribed APs for my schizophrenia, which helped, but after several years, I was diagnosed with TD.

I wanted to share with the MHA community five things I wish I knew before being diagnosed with TD.

1. Understand TD symptoms

TD is associated with the use of APs that may be necessary to treat individuals living with mental illnesses, such as bipolar disorder, major depressive disorder, schizophrenia and schizoaffective disorder. The condition impacts about 600,000 or more people in the U.S. TD movements can affect the face, torso, limbs and fingers or toes.

I wasn’t surprised I was diagnosed with TD because my psychiatrist had informed me about the possibility of TD due to my AP treatment, but I was not prepared for some of the physical symptoms I started to experience.

I woke up one morning and my cheeks were puffing in and out uncontrollably. Then, the movements turned into grimacing. TD affects my walking, and I have difficulty buttoning my shirt and putting a belt on.

2. Know the impact TD has on your daily life

I wasn’t prepared for the reaction of others to my uncontrollable movements, how TD would make me feel and the impact it would have on my routine. Children would stare at me on the bus due to my facial movements. In restaurants, I feel I am often seated away from other patrons because I believe people often conclude that something is wrong with me. I do my best not to take these reactions too seriously, but it can be difficult.

That’s why it’s important to raise awareness for TD, as it’s not only important to family members and those living with the condition, but also to the general public so they have a better understanding and feel more comfortable when they experience someone with TD.

3. Find support and build your community

After receiving my TD diagnosis, my psychiatrist suggested I join a movement disorder support group. Shortly after I started going, I began to learn to accept my condition. It helped me realize I wasn’t alone because others in the group were experiencing similar symptoms.

4. Keep your mind busy

I find comfort in music and listening to records and watching movies. I'm also very grateful to be a patient ambassador for TD and be able to share my story. By sharing my story, I am able to educate and prepare others and have a major impact on people all over the world which shows me that I have a purpose.

5. Have a conversation with your doctor

I see my neurologist once a year in person, because I think he gets a better assessment of my movements. It’s important for providers to address the symptoms of TD, but also the social and emotional aspects of living with TD. If you think you have TD, even mild symptoms, consult with a provider you trust and tell them about your uncontrollable movements. Learn more about TD, living with TD and how to treat TD by visiting TalkAboutTD.com.

This post was sponsored and developed by Neurocrine Biosciences, Inc. Jeff was compensated by Neurocrine Bioscience, Inc. to share his story.