Tardive Dyskinesia (TD) doesn’t just change the way the body moves. It also changes the way we view that body, in mirrors, in photos, in videos, and most of all, in our own mind’s eye.
TD is a persistent movement disorder that can develop after long-term use of antipsychotics and other medications that block dopamine. TD carries downstream impacts that can affect the way we think, feel, and behave. Due to its involuntary, repetitive movements, many people with TD quickly become self-conscious.
Whether it’s movements in the face, tongue, limbs, or trunk, these uncontrolled twitches, jolts, spasms, and more can be highly upsetting for people who just… want… to feel… normal.
Feeling self-conscious about that is not vanity. Even when TD looks mild to other people, it can cause real distress and lead people to withdraw from social life. Various patient surveys indicate severe impacts across physical, psychological, and social domains, with high rates of sadness and embarrassment. In more severe cases, it has been linked to depression and thoughts of suicide.
This article is about rebuilding your sense of self. But it starts somewhere else on purpose — with the fact that the movements themselves can often be treated.
RELATED: Tardive Tics: A Guide to Explaining Your Experience to Others
Two medicines are approved by the FDA specifically for TD: valbenazine and deutetrabenazine. They are the only treatments with strong evidence behind them for reducing abnormal movements. The American Psychiatric Association recommends them for people whose TD is moderate to severe or disabling.
A healthcare provider can discuss these options further with you, but here are a few practical points to know:
Your healthcare team can also check your medication list for other treatments that can worsen TD, such as benztropine and stimulants. Do not stop or lower your psychiatric medicine on your own. Suddenly stopping an antipsychotic can make TD temporarily worse and can cause your underlying condition to relapse.
TD can strike at the core of how we perceive ourselves.
And it’s certainly understandable. Uncontrollable movements—such as facial grimacing, tongue protrusion, or limb chorea—often make people feel as if they’re “on display.” From here, individuals with TD may become obsessed with self-monitoring, even avoiding mirrors, photos, or social settings to minimize the need to see themselves.
For some people, there’s even a grieving process.
It’s not uncommon for patients to report anxiety, irritability, fatigue, low motivation, and fear of rejection. If left unaddressed, these feelings may reach a peak, especially when movements interfere with work, relationships, or daily tasks.
People with TD already know what it feels like. People who are unfamiliar with the condition may stare, ask questions, misunderstand, or otherwise stigmatize the very visible symptoms they see.
Although difficult, it’s important to acknowledge these challenges. Only by identifying how TD affects one’s daily life can that individual begin to make a positive difference.
Now that you’re honest with yourself about what bothers you, without denying or suppressing the feelings, it’s time to actively work toward repairing your perceptions.
Reclaiming self-image starts with separating your worth from the movements. For many people, this begins with small, consistent actions.
The following steps may be particularly effective, depending on your circumstances:
By normalizing experiences, you not only reduce shame but also discover ways to live meaningfully, no matter how severe the symptoms become.
RELATED: “Do People Notice?” The Question Many People With TD Ask
Too often, people think that ‘acceptance’ means just giving up. Rolling over. Throwing in the towel.
This couldn’t be further from the truth. In fact, acceptance merely means acknowledging reality. It means knowing that certain things are outside of your control, allowing you to focus energy on what you can influence.
Don’t believe it will help? You may be surprised. Research on chronic conditions indicates that psychological acceptance is linked to both better emotional adjustment and overall quality of life (QoL).
When striving for improved acceptance, four main areas can help. Firstly, embrace mindfulness-based stress reduction (MBSR). This can mean a lot, but some simple steps include getting out into nature more often, journaling or self-reflection, and using short meditation sessions and breathing techniques to calm your body and mind.
Essentially, MBSR is an evidence-based program developed back in 1979 by Jon Kabat-Zinn at the University of Massachusetts Medical School. It provides actionable steps that people just like you can employ every single day. They’re constructive for stress, anxiety, chronic pain, and even various physical and emotional conditions.
How does it work?
Fundamentally, it’s about the elimination of unpleasant thoughts, emotions, and feelings. Rather than judging or reacting, MBSR teaches us to simply notice what happens and let it pass.
In short, you pay attention to the present moment. From there, you observe your thoughts and emotions without a value judgment, accepting them as they are, instead of fighting or avoiding them. And, when you do choose to respond, you respond thoughtfully and deliberately, not automatically.
Although some clinics provide weekly classes, you can also practice this at home and in daily life. Don’t want to leave the comforts of home? Online courses are available as well!
Secondly, consider grief processing. In other words, allow space to mourn changes. Again, activities like journaling can be useful, as they create an outlet for you to let out what troubles you. Formal therapy, or just talking with trusted people, can also help you manage your “new normal” without self-blame.
Thirdly, consider what is called value-based living. This essentially shifts the focus to core values, things like family, creativity, learning, and advocacy. When your actions are aligned with what matters most, involuntary movements may become less of an emotional burden.
Overall, value-based living is about identifying your deepest personal values—what gives your life meaning and purpose—and deliberately aligning your everyday life with them.
Instead of fixating on TD symptoms, you can shift your attention to what truly matters. The involuntary movements don’t disappear, but they do lose some of their emotional power over you!
So, what do you value most? Family? Creativity? Learning? Spirituality or kindness? By taking small committed actions every day, whether calling a family member or spending time to explore an outlet like writing, music or other hobbies, you embrace what fuels you.
Fourthly and finally, embrace education and empowerment. When you’re learning about TD- whether it’s facts on prevalence, medical management options, or psychological coping mechanisms- the more you know, the more powerful you become!
Early detection and targeted treatment improve outcomes, but even if you’ve endured the disorder for many years, being up to date on the latest research and knowledge is always a good thing.
Living with TD can feel extremely isolating at times, which is why finding a community is so important.
At times, you may feel like there’s nowhere to turn, and if dark thoughts are constantly swimming through your head, don’t hesitate to seek help.
Mental health support is crucial because TD often co-occurs with or worsens underlying psychiatric conditions. It can amplify depression and anxiety, even leading to suicidal ideation.
For the best outcomes, integrative therapy is key.
For one, cognitive behavioral therapy (CBT) helps reframe all those negative thoughts about appearance and abilities. Meanwhile, acceptance and commitment therapy (ACT) can help people build psychological flexibility and value-driven action. There are plenty of professional support networks, filled with psychiatrists, psychologists, and counselors, familiar with movement disorders. These experts can provide tailored strategies, with regular check-ins that address both TD and the primary condition.
By connecting with these networks, you have the opportunity to review your medication(s), optimize treatments, discover holistic programs, and even strengthen your lifestyle foundations, such as nutrition, sleep, and physical activity.
If TD has changed how you see yourself, this doesn’t mean life as you know it is over. It simply means you need to change your lens!
Look at your life differently. Embrace what you can control. Celebrate the amazing medical and multidisciplinary options now out there. Engage with people who know your struggle, and don’t be afraid to lean on them when you need it most.
With the right strategies and support, it is possible to rebuild, accept, and thrive.
Your journey begins today.
By subscribing, you consent to receive emails from BlackDoctor.com. You may unsubscribe at any time. Privacy Policy & Terms of Service.
Enter your name and email to receive the download link.
