The symptoms of tardive dyskinesia can include frowning, lip smacking, rapid eye blinking, and tongue movements — and according to a study published in 2014 in the journal Neurotherapeutics, the condition affects approximately 700,000 people. People with a mild form may not notice their movements or be bothered by them, according to Frederick Charles Nucifora, Jr, DO, PhD, a professor of psychiatry and behavioral sciences at Johns Hopkins Medicine in Baltimore. But for those with a more severe type of tardive dyskinesia, their symptoms could cause embarrassment, unwanted attention, and other challenges to their everyday life. Here, real people talk about what it’s like to live with tardive dyskinesia — from what it feels like, to how it affects their lives. “My tongue gets raw and sore,” she says. “The movement starts from the time I get up in the morning to the time I go to bed at night — it’s constant and uncomfortable.”
2. “My tardive dyskinesia is worse when I’m stressed.”
“The more I stress about it, the more I twitch,” says Debbie Petty, 47, a healthcare professional in Hollister, California. For her, mindfulness and meditation can help control her movements. For Dean Beith, 53, of Kenosha, Wisconsin, a stressful work situation triggered his first symptoms of tardive dyskinesia. “I have never handled stress and anxiety very well,” he says, “and I began to notice a mild tightening and loosening in the muscles on the right side of my body. The spasms became noticeable when I was sitting down, and I decided to go see my primary care physician.” That’s when his doctor diagnosed him with tardive dyskinesia and noted that it could be permanent.
3. “Everyday activities are hard for me.”
Interacting with other people can cause Bates to feel self-conscious about her facial movements: “When I go into a store, I wonder if people are noticing that I’m wetting my lips a lot or clearing my throat a lot,” says Bates. “I know they can’t notice my tongue is moving, but I’m aware of it, so it still makes me self-conscious.” The disorder can also make it hard for people to sit still — something that has the potential to interfere with Beith’s health. “There are many medical procedures I can no longer do because they require you to stay still and I can’t,” he says. “It was an ordeal trying to get chest X-rays not too long ago.” Even a visit to the dentist can be impossible sometimes, he adds.
4. “It’s difficult to work or be social.”
Until she was diagnosed with tardive dyskinesia, Petty was the breadwinner of her household. She hopes to return to her job by the fall of 2018, but she has concerns. “I worry about going back to work because I deal with patients at the bedside,” she explains. “If I’m doing CPR on somebody, and I’m in this extremely tense and stressful situation for an hour or whatever…is [my tardive dyskinesia] going to trigger a storm of movements? Am I going to go bee-bopping all over the hospital looking like a freak?” Bates has similar concerns when she’s out in public: “I’m never at a social occasion or a party where my tardive dyskinesia is not a continual thought on my mind,” she says.
5. “I’m apprehensive about what might come next.”
Some people with tardive dyskinesia live in a constant state of uncertainty about their health and their financial well-being. “I worry about my future,” says Petty. Although she can still drive and take care of herself, she knows that could change if her condition worsens. “My medicine is extremely expensive,” she adds. For now, her insurance covers much of the cost, and she is also enrolled in a program that helps with her copay. “I think I may need to be on this medicine for the rest of my life,” she says. “I worry, ‘What if someday my job and insurance changes and this isn’t covered for me anymore? Are all my symptoms going to come back?’”
6. “I try to stay positive, but sometimes it’s hard.”
For some people, tardive dyskinesia will never go away — and that can take a big toll on their emotional health. Explains Petty: “Every time I go back to [my doctor], I say, ‘When is this just going to be over and [I can] go back to work?’ And he says, ‘Well, we just have to wait and see.’” Petty worries that she’ll have to live with tardive dyskinesia for the rest of her life — and her doctor’s responses felt so discouraging that she went home and cried for two days. “Where is the hope around here?” she wonders. And yet, Petty still manages to pick herself up and keep going. “I do feel like my lifestyle and my state of mind are getting better,” she says. “I’ve just tried to stay the course and find the positive in it and not dwell in the past.” Dealing with tardive dyskinesia has caused Bates to feel a connection to others with the condition. “Unless you have a movement disorder, I don’t think it’s possible to understand the magnitude of the effects it has,” says Bates. “The condition, in and of itself, is a very isolating experience.” Although her husband and best friend check in with her regularly about how she’s doing, she doesn’t really know what to tell them beyond: “It’s the same; thanks for asking.” While no amount of talking about it changes anything, she still considers herself a positive person. “I refuse to give into this,” she says. “I always say, ‘Never give up, never give in, keep the faith.’”
