Moving Beyond Stigma for People Living with TD

May 6, 2019

Patient advocates want the lip smacking, grimacing and uncontrollable twitching caused by the movement disorder tardive dyskinesia to do more than attract stares.  They want it to elicit empathy and understanding.

That’s the goal behind Tardive Dyskinesia Awareness Week, May 5-11.  

Tardive dyskinesia affects roughly 500,000 Americans, but the general public is still unaware of the disease and its symptoms.  Tardive Dyskinesia Awareness Week aims to increase understanding about the cause, symptoms and impact of tardive dyskinesia – in hopes of decreasing the stigma that many people with TD face.

And that stigma can be intense.  People develop tardive dyskinesia as a result of long-term use of antipsychotics for mental illnesses like bipolar disorder or schizophrenia.  That means that those with TD face the stigma of tardive dyskinesia symptoms on top of the stigma of mental illness. Tardive dyskinesia can impact their ability to work, sleep and exercise – and it can be a blow to their self-esteem.  It’s little wonder, therefore, that tardive dyskinesia leads some to withdraw from society and to avoid family and friends.

The disease also impacts caregivers.  Lack of public understanding about tardive dyskinesia may leave them also feeling isolated, unable to establish a support network of people who understand their loved one’s struggle.  It may be difficult for them to find peers who share the experience of caring for someone with tardive dyskinesia.

Therapies for tardive dyskinesia can help control symptoms and improve quality of life for people living with TD – if they seek treatment.  Another important goal of increasing public understanding is to spark greater awareness among those with TD, who may not know their treatment options.

In light of this fact, California in 2018 became the first state to declare Tardive Dyskinesia Awareness Week. The initiative received bipartisan support in the state legislature and has prompted similar efforts in more than 30 other states this year. Learn more about Tardive Dyskinesia Awareness Week through #TDAwarenessWeek.  

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