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.”
This can lead people with TD to avoid social situations, delay asking for help, or worry about how they will be treated at work or in everyday life, Dr. Beltre says. These can all have a significant ripple effect on both emotional and physical health, which is why it’s crucial to find ways to deal with the stigma.
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.”
Typically, TD is not reversible, but there are ways to cope and lessen the effects of the perceived judgment related to TD. Here are five to consider.
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.”
Those discussions also give you a greater sense of support, which is essential when dealing with both mental health conditions and the effects of medication, he says. Research has shown that support from family (including your partner, if you have one) can bolster mental health by reducing depression and anxiety, as well as decreasing perceived stress.
Other research shows that social contact can be a way to combat stigma itself when it comes to mental health conditions. While educating people about the realities of a condition doesn’t have strong evidence to support reducing the prejudice that comes with stigma, studies have shown that social contact — either virtually or in real life — between people who have mental health conditions and others can, in fact, reduce stigma. In other words, simply being yourself in social situations can help change mistaken ideas people have about TD.
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
Moving your body regularly in ways that feel good can improve your confidence and help you feel less self-conscious, says Truong. Research backs this up, showing that exercise can improve self-esteem. And having a better self-esteem is connected to feeling the impact of stigma less intensely, according to research on people with schizophrenia.
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.
Free, virtual support groups are available through the National Organization for Tardive Dyskinesia, for instance. These allow you to share self-care tips, talk about treatment, and get emotional support from others who understand the difficulties of living with TD.
“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
Research on people with mental health conditions has found that many people who self-stigmatize, or believe society’s misconceptions about their condition, have lower self-esteem and a reduced sense of well-being. But there are ways to combat this: One study found that people who maintained a growth mindset over the course of a year, or a belief that their mental health condition can improve over time with support and treatment, experienced less self-stigma, and higher levels of social engagement, positive emotions, meaning, relationships, and a sense of accomplishment.
What’s more, actively rejecting the misconceptions attached to stigma can help people with mental health conditions support a positive identity that’s in line with their personal values. In one study, rejecting stigma was connected to reduced emotional distress, better recovery, and increased satisfaction with life.
Studies on people with a range of mental and physical health conditions have found that self-compassion, or treating yourself as you would someone you care about, is associated with lessened self-stigma and negative outcomes. Self-compassion is connected to increased happiness, optimism, and life satisfaction, and may also protect you from some of the negative effects of stigma. Being kind to yourself when you’re facing something difficult, rather than judging yourself, and recognizing that many other people share similar struggles can go a long way in terms of how you feel.
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.
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