7 Tips for Overcoming the Stigma of Tardive Dyskinesia
- Tardive Dyskinesia Stigma: Healthy Ways to CopeAbout half a million people in the United States have tardive dyskinesia (TD). It’s a movement disorder that can cause involuntary and repetitive grimacing, blinking, chewing, twitching, and rocking. The general public has low awareness of the condition, and this lack of understanding leads to negative social reactions that harm the self-esteem of people living with TD. Learn what you can do to handle the stigma, feel better about yourself, and live your best life with TD.
- 1. Learn as much as you can about tardive dyskinesia.Tardive dyskinesia is most often, but not always, caused by long-term use of antipsychotic medications. Many people who develop TD as a side effect of medication believe they weren’t fully informed about the possibility. Feeling ill-advised by an expert you trust can naturally cause resentment and anger. Your emotions are valid, but don’t let them get in the way of becoming as informed as you can from now on and using the lessons learned to seek a better provider relationship.
- 2. Connect with people who get it.Peer support helps many people with tardive dyskinesia handle the stigma. Check out support groups in your community or online that are focused on dealing with TD, the medication that caused your TD, or your underlying condition: schizophrenia, bipolar disorder, depression, anxiety, gastrointestinal problems, or Parkinson’s disease. Many videos are also available online that feature people with TD sharing their stories—how it’s affected them socially, ways their relationships have suffered, and what has helped them re-engage.
- 3. Help your family help you deal with tardive dyskinesia stigma.TD may hit the person who has it the hardest, but it also takes a toll on family, friends, and caregivers who want to help and who worry about how you’re doing. Ask your doctor for resources to help them get educated on the condition and the best ways to support you, like offering opportunities to socialize and not focusing on your movements. Like those with TD, your loved ones may also benefit from joining a support group.
- 4. Prioritize self-care over other people’s perceptions.The fear of people’s reactions to the symptoms of tardive dyskinesia or circumstances that caused it makes many people with TD react in unhealthy ways. You might find yourself shying away from your usual activities, avoiding people, and isolating with feelings of shame and anger. None of these coping mechanisms are good for your TD or your underlying condition. Changing your thought patterns doesn’t happen overnight. Ask your doctor how cognitive behavioral therapy (CBT) or another type of therapy can help.
- 5. Stay social with tardive dyskinesia.Socializing may be the last thing you want to do, but isolation and loneliness can be worse than feeling the effects of TD stigma. Research has shown social withdrawal can be as bad for you as smoking or obesity. Take the smallest steps you’re comfortable with now and build up as you gain more confidence. If you’re worried about being stared at, have a brief explanation ready like, “I have a condition that causes these movements I can’t control.”
- 6. Bust stress to better handle tardive dyskinesia stigma.The stress of living with tardive dyskinesia can make it harder to work toward taking the stigma of TD in stride. Pets can be a great relaxer. One study has shown that petting a cat or dog for 10 minutes lowers stress. Other studies show that listening to music, particularly classical, can reduce stress levels. Still others have linked stress reduction with getting outside in morning light and limiting the number of times you check smartphone notifications throughout the day.
- 7. Stay up to date on your tardive dyskinesia treatment options.In some cases, the current severity of tardive dyskinesia symptoms remains permanent, but in other cases, it can be improved. Depending on your situation, you may have more options for treatment than you know. Two new medications to treat TD have been approved by the U.S. Food and Drug Administration (FDA) within just the last few years. Deep Brain Stimulation (DBS) may also be appropriate if you don’t see enough benefit from medication. Stay in touch with your doctor on advancements.
Tardive Dyskinesia Stigma | Tardive Dyskinesia