The uncontrollable movements of tardive dyskinesia can lead to feelings of embarrassment, frustration, and physical discomfort. But there are ways to manage these symptoms in your day-to-day life.
Tardive dyskinesia (TD) is a movement disorder that
Living with TD can affect all areas of your life, including work and personal relationships. Many people report that TD makes it hard for them to do physical activities such as exercising, holding things, and even bathing or showering.
People with TD report problems at work, at school, and in social situations and often feel like others are staring at them or making jokes. As a result, they may experience feelings of self-consciousness, embarrassment, and anger when they have symptoms.
But there are some strategies you can try to help manage TD symptoms and maintain a better quality of life.
TD can make work challenging because of stigma and the physical impact of symptoms. A 2023 study found that a significant number of people with TD stop working or change professions because of embarrassment, physical barriers, or difficulty finding an employer.
Tips for managing symptoms at work
Most people want the opportunity not only to work but to thrive in their work. Strategies such as the following may help reduce barriers in the workplace:
- Telling your employer: By disclosing your medical condition, you’ll have the chance to discuss accommodations for your workspace or your schedule.
- Using assistive devices: Voice recognition software and headsets are two options if you have trouble typing or holding a phone.
- Working on challenging tasks early: If TD causes you physical fatigue or discomfort, try to arrange your workday so you complete the most difficult tasks earlier in the day, when you might have the most energy.
- Establishing your comfort levels: Working with customers or clients may be challenging if they don’t understand the movements that TD causes. It’s important to decide how much interaction you’re comfortable with and what kind of interactions work best for you.
Children might not be used to seeing symptoms of TD. They might find the symptoms confusing or scary, especially when a family member is experiencing them. You can work with other loved ones to make this adjustment easier so you can still enjoy family time.
Tips for managing symptoms with kids and grandkids
Consider talking with kids about TD. Let them know that it can affect how you interact with them. Here are some strategies that might help:
- Explaining TD: Let children know that you have a medical condition you can’t control but that it doesn’t mean you’re in any danger. You can say that you might look or seem different at times, but it’s not about them or your relationship. The National Organization for Tardive Dyskinesia (NOTD) offers an illustrated children’s book that may help.
- Suggesting other ways to connect: Some activities you used to enjoy together, such as games or puzzles, might be challenging because of TD. Suggest other things you can do that you’ll both enjoy, such as listening to music, taking leisurely walks, or watching movies together.
- Showing kids how to help: You can get kids involved by suggesting ways they can help you. For example, you can ask them to carry items to the dinner table or to help with cleanup after get-togethers if your TD makes these tasks difficult for you.
In a 2023 study, many people with TD reported that the condition had a significant impact on their social experiences. TD often affected activities they would do for enjoyment and to keep up relationships with family.
In addition to issues related to specific symptoms, such as speech difficulties, more than half of the study participants reported experiencing negative reactions from others. Strangers or acquaintances would stare, ask why they were moving, and ask them to stop.
Tips for managing symptoms at social events
You might be able to choose activities that allow you to enjoy being with others while managing TD symptoms. Here are some ways to reduce others’ awareness of your symptoms:
- Ordering food that’s easy to eat: You might choose a meal that’s simple to manage, such as one that doesn’t require a lot of cutting or chewing. If you’re attending a catered event, you might be able to ask for the menu in advance or ask about dietary restrictions.
- Gesturing as you speak: If you’re worried about small hand movements, you might want to disguise them with gestures and other movements you can control. You can practice this in private and assess how comfortable it makes you feel.
- Holding something in your hands: Holding a small item can sometimes help minimize shaking or jerking movements that affect your hands.
- Communicating nonverbally: If you have concerns about speaking, consider using nonverbal types of communication like gestures, facial expressions, or written notes to convey your thoughts or feelings.
- Educating others: If you’re in an environment with people you see regularly, you might consider speaking with them about TD. You can frame this as a way to let them know that they don’t need to be concerned if they see you making unexpected movements, since the movements are part of a condition you cannot control.
With TD, you might have symptoms at any time of day, which means the condition can affect all parts of daily life.
In a 2023 study of caregivers of people with TD, more than 90% said the condition affected the person’s sleep quality, exercise habits, and ability to do household chores. More than 80% said that TD affected the person’s independence.
Tips for managing symptoms in daily life
You might consider making several small changes to help reduce the impact of your TD symptoms. Here are some strategies to try:
- Using electrical appliances: If you have difficulty shaving or brushing your teeth, consider using an electric toothbrush or razor.
- Planning out tasks: Breaking down large household tasks, such as vacuuming, into smaller chunks can give you time to rest in between.
- Practicing stress reduction: Stress can make it harder to manage symptoms. To help reduce stress, consider habits such as practicing mindfulness and spending time in nature.
- Engaging in regular exercise: Many types of exercise can benefit your mental and physical health. Seek out an activity that works for you, such as walking, yoga, or lifting light weights.
If you live with TD, know that you’re not alone. You’re part of a larger community of people who are living with TD. Joining a support group can connect you with people who have similar experiences.
The NOTD hosts virtual TD support groups several days per week and provides detailed information about strategies you can use to manage specific TD symptoms.
The uncontrollable movements of TD can be challenging for people with TD and their caregivers. The condition can cause difficulties at work, in social situations, with family, and in other aspects of life.
The involuntary movements may cause embarrassment and feelings of self-consciousness when you’re around other people, even family and friends.
Talking with your loved ones and explaining TD, how it looks, and how it affects you can be helpful at home and when you’re spending time with family and friends. When you’re at work, strategies such as using assistive devices and breaking complex tasks into smaller chunks can reduce the challenges of specific TD symptoms.
Joining a support group can help you feel less alone. Organizations such as the NOTD can provide support, resources, and information for people with TD.