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Treating Tardive Dyskinesia

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Managing Tardive Dyskinesia: What I Want My Patients of Color to Know

Medically Reviewed By Nicole Washington, DO, MPH

As a woman of color and a movement disorder specialist who treats tardive dyskinesia as well as many other conditions, I recognize that health inequity does exist, racial disparities do occur in our system, and we really need to educate and give patients of color the tools to be able to advocate for themselves.

Tardive dyskinesia is a side effect of taking certain medications, most commonly antipsychotics, which can be used to treat psychiatric disorders like depression, schizophrenia, and bipolar disorder. Symptoms include involuntary movements like lip smacking, moving your mouth or tongue, eye blinking, making other facial expressions, or a lack of control over repetitive movements, i.e. incoordination. It can be a difficult condition to live with, but treatment is available to ease symptoms, and many compassionate doctors are there to help you manage it. Here’s what I want my patients of color with tardive dyskinesia to know.

1. See a specialist as soon as possible

It is estimated that people of color develop tardive dyskinesia at twice the rate of white patients, and people of color are more likely to see a doctor at a later stage, when their condition is more severe. More severe  psychiatric conditions may be treated with what we call “first generation” antipsychotics, which are more likely to cause tardive dyskinesia. We know that patients of color, particularly Black patients, are more likely to be prescribed first generation antipsychotics rather than “second generation” or relatively newer drugs of this class that have a lower likelihood of causing these side effects. 

Knowing these challenges is important, so I encourage all my patients to educate themselves as much as possible about possible side effects of any drug they take. Also important is to find a specialist, who will have advanced knowledge in helping you manage your condition. 

If you’re experiencing symptoms of schizophrenia, bipolar disorder, depression, or other psychiatric conditions, seek out the care of a psychiatrist, who is more likely than your general practitioner to understand the potential side effects of a medication, and who also has greater expertise in making the correct psychiatric diagnosis, and thus, recommending the right treatment.

If you have developed symptoms of tardive dyskinesia, it’s key to see a neurologist who is a movement disorder specialist, with whom your psychiatrist can partner. They will know how to address your tardive dyskinesia symptoms while keeping your psychiatric symptoms managed as well. 

2. Find a doctor with cultural humility

Beyond the specialty and expertise of the physician is their sensitivity to and acknowledgment of health inequities and racial disparities when it comes to healthcare, particularly as regards tardive dyskinesia. Some colleagues of mine have said, “I treat all my patients the same,” but that’s not the message I try to put out there. We shouldn’t be treating all of our patients the same. We should be treating people of color differently because this condition affects them differently; they are at higher risk and experiencing inequities. It’s not enough to treat them the same as white patients who may have better access to resources and may not face the same challenges. 

We have to provide educational opportunities that are specific to our patients of color. We have to reach out and provide access to them, fast-tracking them into healthcare institutions. We have to have cultural humility rather than cultural competence. Cultural competence means you understand all the nuances of different cultures and racial backgrounds, but I think it’s arrogant to assume we will be able to know every single thing about every culture. 

Cultural humility, however, is the understanding that we don’t know everything, that we must learn from our patients and leave an openness in the interaction with our patients to be educated by them – to not jump to conclusions and make assumptions about their needs and limitations, but instead partner with them and empower them to guide us in how to provide them with the most effective care.

This is a particular nuance that specifically people of color may not feel empowered to expect from their doctors. I want my patients of color to know that if their relationship with their doctor doesn’t give them comfort, if they don’t feel that they are being heard or being seen, if they don’t feel their cultural background or their unique needs are being acknowledged and treated with respect, then they don’t have to settle. 

Their physician should acknowledge that there are social determinants of health that may limit their ability to seek the care they need. Their physician should give them empathy, compassion, sensitivity, and curiosity. It can be hard to find a doctor who exhibits all these qualities, but if you have the ability to keep looking, it is worth it. I believe it’s okay for us to say that there are cultural differences, that your attitudes, beliefs, and culture might require a different approach to your medical care, and your physician should respect that. 

3. Ask questions

Once you have found a doctor you trust, that should also mean you’re comfortable asking questions. Your doctor wants to make sure you understand all the nuances of your condition and treatment, so we encourage you to ask for clarification, ask for where you can find additional information, and do research beyond what they share with you so that you can discuss this with them at your next appointment. 

Asking curious questions is never a bad thing.  Ask more about your diagnosis and what it means. Inquire about the complete array of treatment options that are available. Ask about at-home, alternative therapies that might help, including exercise and diet changes. Being curious about your medical conditions and the management of it is never wrong. 

4. Find support

There are many national organizations out there, like the American Academy of Neurology and the Movement Disorders Society, and there are also local support groups that your doctor can refer you to. One thing I have found in my care of patients of color with tardive dyskinesia is that the churches they belong to are highly trusted and strong resources. Within churches are often health liaisons, who can help support them as they navigate the healthcare system. These health liaisons will have training and experience reaching out to healthcare organizations to try to get specific help for their parishioners. 

I want patients of color to know that as a community, we as their healthcare practitioners are sincere in our desire to address health inequities and recognize that racial disparities do exist. We strive to be part of the solution, rather than the problem.

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Medical Reviewer: Nicole Washington, DO, MPH
Last Review Date: 2024 Jan 5
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