6 Ways to Cope With Tardive Dyskinesia Stigma

Because the movements can be so visible, they can lead to stigma, says Nestor Beltre, MD, a neurologist with the Miami Neuroscience Institute at Baptist Health South Florida. Stigma refers to negative and unfair beliefs about your condition that can even lead to discrimination.

"Tardive dyskinesia may be misunderstood by others, which can make patients feel judged, embarrassed, or singled out," he says. "On top of that, because TD is often associated with treatment for mental health conditions, some patients face a double stigma, one related to the movements themselves and another tied to mental illness."

How to Cope With Tardive Dyskinesia Stigma

For some people, exacerbating the effects of TD-related stigma is hypervigilance about how other people may be observing them, and that can sometimes make involuntary movements worse due to stress, says Daniel Truong, MD, a neurologist and the medical director of the Truong Neuroscience Institute at MemorialCare Orange Coast Medical Center in Fountain Valley, California.

"This creates a loop of anticipatory anxiety in social settings, and that self-consciousness can contribute to greater loss of control over small movements," he says. "When you sense negative reactions like staring, avoidance, or insensitive comments, that reinforces a sense of shame and low self-esteem."

1. Talk Openly About Your Condition

"Many people try to deal with TD alone, and that includes struggling in silence because they don't talk about what's happening and how it's affecting them," says Beltre. "Talking openly with trusted family members and friends about what TD is can reduce misunderstandings and make social settings feel less stressful."

2. Have a Go-to Script

When discussing your situation with others, including casual acquaintances or even strangers who have made insensitive remarks, it helps to have a short, neutral explanation handy, says Dr. Truong.

He suggests using a simple explanation that can dispel misinterpretation quickly, such as: "I have a neurologic condition that causes some involuntary movements." That can signal confidence, prevent common incorrect assumptions — such as people suspecting you are intoxicated or unstable — and let you feel more in control, he says.

"Effective coping with TD-related stigma hinges on reducing ambiguity, which means providing a clear explanation, and managing the dynamics of everyday interactions," says Truong. An easy-to-understand description that doesn't go into specifics can be used in nearly any setting, including your workplace, he says.

3. Adjust Your Medication

Open communication about your condition should extend to clinicians as well. Describe the impact of TD to a neurologist, psychiatrist, or other health provider; there are treatments for TD that may be considered, and you should know about those options.

"Definitely speak to your physician as soon as possible when you notice TD symptoms starting, to see if changing or adding a medication could help improve or resolve the TD," says Dr. Keyashian. Reducing symptoms would make TD less visible, which can lower the impact of stigma as a result.

4. Get Consistent Exercise

5. Join a Support Group

While discussing TD effects with family, friends, and your doctor can be helpful, sometimes you just want to talk to someone who's faced similar moments experiencing stigma and isolation — and that's where support groups can come in.

"Broadly speaking, social isolation has been associated with negative health outcomes, including increased risk of heart disease, for example," says Beltre. "For someone with TD, isolation can make an already difficult condition feel even harder to manage. That's why reaching out to others is a big part of coping with stigma and reducing its effects."

6. Be Kind to Yourself

The Takeaway

• Tardive dyskinesia involves visible, involuntary, repetitive movements such as lip smacking, rapid eye blinking, and other potentially embarrassing or disruptive effects that can lead to stigma.
• Because they can be so visible, symptoms can lead other people to misinterpret what's going on in ways that can impact how you feel, such as thinking someone with TD is intoxicated.
• There are a number of strategies for coping with TD-related stigma, including talking openly with friends and family, rejecting the misconceptions about TD that help fuel stigma, and practicing self-compassion.