If you’re living with tardive dyskinesia (TD), you already know its effects on your body. The involuntary movements in your face, limbs, and torso can make it hard to do everyday activities, such as talking, eating, walking, and taking care of yourself.
Common symptoms such as frowning, making faces, or lip smacking can draw unwanted attention in public. People may stare or ask uncomfortable questions you don’t want to answer. Social situations may feel daunting, especially in new settings.
When it’s hard to complete simple daily tasks, or when you get unwanted attention from strangers, it’s no wonder TD can take a toll on your mental and emotional well-being, too.
Here are some mental health challenges you should be on the lookout for and tips on how to manage them.
Invisible Effects of Tardive Dyskinesia
The physical challenges of TD can lead to all sorts of emotional challenges.
In a 2021 study, researchers analyzed the social media posts of people living with TD. They found that 64% of the posts were negative. The most common themes in the posts included:
- Rejection by others
- Fear of being judged by others
Researchers in the study also reported that people with TD said they felt self-conscious and ugly. For these reasons and others, many people with TD avoid leaving the house. Some people feel enough despair about their symptoms, the study found, that they think about suicide.
Many people who have TD are already living with mental health conditions, such as schizophrenia, major depression, and bipolar disorder, since TD is often a side effect of the medications used to treat these conditions. The distress and social isolation that TD may cause can make those pre-existing mental health problems worse. It becomes a vicious cycle as stress also makes symptoms of TD worse and more obvious to others.
For people with TD who weren’t already living with depression and anxiety due to mental illness, the risk of developing these problems is above average. One study found that almost half of people who got TD after taking antipsychotics developed moderate-to-severe depression or anxiety. Among those who didn’t have TD, less than 40% had depression or anxiety.
Another study looked at the overall quality of life of people with bipolar, schizophrenia, and major depression, both with and without TD. The study found that those with TD reported a significantly poorer quality of life and much greater social isolation than those without the condition.
What You Can Do
To counteract the impact of your TD symptoms on your mental health, there are several strategies you can try.
Arm yourself with knowledge. One way to manage the stigma of tardive dyskinesia is to learn everything you can about it. Not only will you feel more in touch with your own condition, you can also answer questions with more confidence when someone approaches you.
Use resources. Organizations such as the National Organization for Tardive Dyskinesia or the National Alliance on Mental Illness offer invaluable information about TD as well as links to support groups and professionals who can guide you in living with this condition.
Open up. Tell trusted friends and family what it’s like for you to live with TD, so they can better understand what you’re going through. Even those close to you may not know the extent of your struggles. Explaining it can help them be more aware and sensitive.
Build support. Whether online or in person, surrounding yourself with supportive people can help reduce some of the embarrassment of TD. It can be especially valuable to make connections with others who live with TD as well. Ask your doctor about virtual or in-person groups, or search for them online. Support groups can be a source of advice and encouragement and help you feel less alone.
Ask your doctor about treatment. You may be able to lower the dose of the medication that’s causing your symptoms. Or you may be able to try medications called vesicular monoamine transporter 2 inhibitors that treat TD. They help reduce your abnormal movements.
Manage stress. If you are proactive about keeping your stress low, it can help you manage your overall mental and physical health. Practice stress-reduction techniques, such as deep breathing exercises or meditation. Get regular exercise and plenty of quality sleep. Watch your caffeine intake, and schedule breaks throughout the day, especially if you’re feeling down.
Get help. If you are having thoughts of suicide, get help right away. Call a loved one, your doctor, therapist, or the Suicide and Crisis Lifeline at 988.
Photo Credit: MarioGuti / Getty Images
Movement Disorders Policy Coalition: “Living with Stigma.”
National Alliance on Mental Illness: “Tardive Dyskinesia.”
Dove Press: “Assessment of the Impact of Tardive Dyskinesia in Clinical Practice: Consensus Panel Recommendations.”
BMC Psychiatry: “Patient perspective of tardive dyskinesia: results from a social media listening study.”
Quality of Life Research: “Effect of tardive dyskinesia on quality of life in patients with bipolar disorder, major depressive disorder, and schizophrenia.”
NAMI Virginia: “Tardive Dyskinesia.”
Cision PR Newswire: “Neurocrine Biosciences Presents New Data from RE-KINECT, the Largest Real-World Screening Study of Possible Tardive Dyskinesia, Demonstrating the Effect of Involuntary Movements on Patient Quality of Life.”