Black People with Tardive Dyskinesia: 3 Tips for Advocating for Your Health

Prolonged use of antipsychotic medications puts you at risk for tardive dyskinesia (TD), a movement disorder that causes uncontrollable muscle movements. People with certain mental health conditions like schizophrenia and bipolar disorder can benefit from these treatments. However, between 16 and 50% Trusted Source PubMed Central Highly respected database from the National Institutes of Health Go to source of people who take antipsychotic medications develop TD, and research suggests Black people are more likely to be affected than white people. Learn how to manage your TD and advocate for high quality care.

Tardive dyskinesia is a movement disorder that’s usually a side effect of antipsychotic medications. Older “first-generation” antipsychotic medications are more likely Trusted Source PubMed Central Highly respected database from the National Institutes of Health Go to source to cause TD than newer “second-generation” options. This is one of the reasons doctors often prescribe second-generation medications to reduce patients’ risk of this life-altering condition. However, studies suggest Black people are more likely to receive first-generation antipsychotics Trusted Source Wiley Peer reviewed journal Go to source than white people, which could be one of the factors that increases the risk disparity in TD. If you are experiencing tardive dyskinesia symptoms, there are several paths you can take to lessen or eliminate symptoms while still managing your overall health.  

TD symptoms include involuntary movements of the eyes, tongue, lips, or limbs. They can be disruptive and embarrassing, and the earlier they’re addressed, the better. Track your symptoms and talk about them with the doctor who prescribed your antipsychotic medication. They may suggest lowering your dose or trying another medication. It can take time, but many people find their symptoms are reduced after taking these steps. Your doctor may also recommend taking a new medication specifically to treat TD.

If your doctor minimizes your concerns or doesn’t take you seriously, don’t hesitate to get a second opinion. It can be a hassle, but it’s worth the effort to find a solution to manage your TD and your other health conditions. You may want to prioritize seeing a movement disorders specialist – a neurologist who sub-specializes in treating conditions like TD. If you experience racial bias, try to find a doctor who has received training in cultural competence, or who has a similar background to yours. People of Color experience better communication Trusted Source PubMed Central Highly respected database from the National Institutes of Health Go to source with doctors of similar racial backgrounds or doctors who speak the language they’re most comfortable using. Improved communication means you can effectively discuss your concerns and advocate for a treatment plan that works best to manage your condition while reducing your risk for side effects.

To find a culturally competent doctor, a Doctor of Color, or a physician who speaks the language you prefer, turn to resources like BlackDoctor.org or huedco.com. You can also filter by language on the Healthgrades.com physician search tool.

Advances in the medical field produce new medications and measure treatment outcomes all the time. When you arm yourself with information, you give yourself the chance to have a productive, informed conversation with your doctor about your specific needs. Don’t be afraid to ask your doctor questions about your diagnosis or treatment, and take all the time you need. Bring a notebook to your appointments so you can take notes and jot down questions. If you don’t feel your doctor is giving you clear explanations or enough time, do your best to ask for what you need. If necessary, find a new doctor who makes you feel comfortable and who explains the details to you clearly. You can also educate yourself on your own, although it’s important to do so wisely. Turn to trusted resources like the National Organization for Tardive Dyskinesia, the Dystonia Medical Research Foundation, or health websites that clearly identify their sources and provide evidence-based information. Learn about TD symptoms, the medications that can cause them, and treatment options. Having a foundation of knowledge can enable you to better understand your doctor’s instructions and allow you to explain your concerns clearly. New treatments have come to market in previous years, including new medications and deep brain stimulation therapy. Physical and occupational therapy can also be helpful tools. By staying up to date on treatments, and learning all you can about your condition, you can partner with your doctor to find the best path forward.

If you’re living with TD, know that you are not alone. Leaning on friends and family for support is crucial. You may also benefit from connecting with other people living with TD. Ask your doctor if they can recommend any support groups for people with TD. You can also find support groups by searching online and on social media. Facebook groups and other social channels can be a helpful way to meet others who understand what you’re going through. They may also be able to offer tips and advice based on their experiences navigating the healthcare system with TD.

Tardive dyskinesia is not an easy condition to live with, but it can be effectively treated and managed. With the right medical professional, an understanding of the condition and its treatments, and support from loved ones and other people living with TD, you can learn ways to manage your health and improve your quality of life.