Living with the symptoms of tardive dyskinesia (TD) can range from being an annoyance to significantly affecting your daily life. Regardless of symptom severity, though, it’s common for people with the condition to be self-conscious about it. Many of them wonder how much the people around them notice and what they’re thinking. They may also ask themselves if it’s something they should talk about to clear the air or keep to themselves. Let’s look at some information that may help you.
While it’s believed that TD may be underdiagnosed, almost 104,000 Americans were diagnosed with the condition between 2016 and 2020. Additionally, the rate at which people develop TD after taking certain medications can range from 15-53 percent depending on how long they’ve been on that regimen. That’s because the symptoms of TD are usually progressive. They are more likely to occur the longer you stay on these medications, and then they typically worsen over time. With that in mind, those numbers certainly suggest that more people are dealing with TD than you may realize.
Although the severity of the condition and the type of symptoms may vary, everyone with TD experiences some form of involuntary motion of the facial muscles, tongue, neck, trunk muscles, or limbs. The symptoms can include:
Since symptoms vary and may not be noticeable initially, it’s understandable that you may be wondering if everyone is self-conscious about them. In a social media-based study published in 2021, researchers analyzed 261 posts from individuals living with TD or caregivers of people with the condition. Of these posts, 64 percent were negative, 33 percent were neutral, and the rest were positive.
Some of the negative feelings expressed were anger at developing a condition because of medication that was prescribed for a different illness, insecurity, fear of not being accepted by others, and fear of being judged based on their symptoms. Although this study had its limitations, it reflects an issue that many people living with TD often express. Some of them even mention avoiding social gatherings, public outings, and work events because of their anxiety about their symptoms. Sometimes, they give up hobbies and other activities that used to help them relax or make them happy.
As you’re working through your life with TD, it can be helpful to meet with others who are living with the same condition. One easy way to do this is to check out the virtual support groups provided by the National Organization for Tardive Dyskinesia. These free online sessions can be a great way to share your experiences while learning from others. Additionally, TalkAboutTD provides resources that can help with better mental health and your overall wellness when living with TD.
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When it comes to what other people notice, though, some people’s experiences suggest that you may be more sensitive to the issue than those around you. In one account, an individual who was concerned that her TD symptoms were drawing unnecessary attention at work notes that nobody treated her differently or brought it up. In fact, she received accolades, including a raise and a promotion. She eventually concluded that her symptoms bothered her more than her coworkers.
While not specific to TD, you may be interested in what’s known as the spotlight effect. When walking into a room or being around others, you may feel as if all eyes are on you or that people are noticing something you’re already self-conscious about. When this theory was tested, though, researchers found that people were far less observant than others gave them credit for. They didn’t notice when participants in the experiment wore an “embarrassing” T-shirt, carried obvious items, or changed clothes altogether. It certainly suggests that your symptoms–especially minor ones–may not be as obvious as you think.
Of course, it’s worth noting that some symptoms can be significant enough to draw attention. In those cases, it can help to talk to your doctor about managing them. With TD, a quick diagnosis can increase your likelihood of getting the symptoms under control, so you don’t have to worry as much about them disrupting your life. Even with treatment, you can also develop a few effective tricks for disguising your involuntary movements.
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While there are several treatment options for TD, the progression of the condition can be irreversible. That means some people may still experience some involuntary movement even though they’re on medication to manage their symptoms. If this is happening to you, learning how to make them less obvious may help you feel less self-conscious in public.
When it comes to your employers, friends, and family, it may be best to start with a conversation. You can let key people know what’s happening and how your symptoms may affect your daily routine. Doing this can be especially life-changing at work, where you may need assistive devices like headsets to carry out your responsibilities. When loved ones know what’s happening, they can also help when you’re in public, so you’re not put into uncomfortable situations.
For social events, it’s best to adjust your behavior based on your symptoms and comfort level. For example, if you have trouble using utensils together, such as a knife and fork, you should order food that’s easy to handle. If your hands twitch, then learning to gesticulate when you speak can help to disguise them. Those around you will expect you to move your hands, so they’re less likely to pay attention to any other movement.
Another trick that can bring less attention to your hands is to keep something in them. When you’re holding a small item, your hands may not move involuntarily as often. Additionally, depending on what you’re holding, others may attribute movements to regular twitches that happen when something is in your hands.
Many people are living with TD, and health professionals surmise that the number may increase over time. In the meantime, those who have the condition must learn how to manage the symptoms when living their everyday lives. While others may not notice it as much as you think they do, it can help your self-consciousness if you learn how to disguise your involuntary movements.
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