Tardive dyskinesia (TD) support specialist April Kraft shares her personal journey with the social stigma of involuntary movements and the strategies she uses to build confidence and community.
Tardive dyskinesia (TD) is a syndrome that can develop as a side effect of certain medications. People with TD have involuntary, repetitive movements that may affect the face, limbs, and other parts of the body. These symptoms may continue for many years after the person has stopped taking the medication that caused them.
A 2023 survey of people with TD found that the symptoms can negatively affect physical, psychological, social, and professional well-being.
Misunderstanding and beliefs about TD stem from the fact that antipsychotics are among the medications that can cause TD as a side effect. This can lead to stigma, with some community members making negative assumptions about people with this condition or treating them unfairly. People with TD may worry about how others will perceive or treat them, which can contribute to self-consciousness, social isolation, and stress.
Healthline spoke with April Kraft from the National Organization for Tardive Dyskinesia (NOTD) to learn more about the social stigma related to TD and strategies for managing it.
April has been living with TD for nearly 6 years and serves as a TD Support Specialist. Here’s what she had to tell us.
This interview has been edited for brevity, length, and clarity.
I haven’t experienced a lot of stigma that I can specifically say was TD-related.
But early on, when my uncontrollable movements were the worst, I had them from head to toe. Before I would meet up with someone that didn’t know me, I would let them know: ‘I have a neurological condition that makes me have uncontrolled movements. I promise I’m not on drugs.’
That was my fear: that somebody would think the movements were due to illegal drugs or that I might be dangerous, in psychosis, or something. Because so much is misunderstood [about this condition].
I sometimes feel, particularly when I’m at the grocery store, like someone will notice that my bottom lip is pulling down. Particularly children, because they don’t miss much. That’s the most visible [symptom for me now], and that’s something that can cause me to feel self-conscious.
But what I usually do is something I call ‘bringing the humanity back.’
I will pop up and say, ‘Hi, how are you?’
And that’s like going, ‘Hey, I’m a person too. You know, this may look funny to you. I understand that. But here’s my smile, because I’ve got one just like you.’
For the first time in months, I went swimming. It helps me so much because the weightlessness of swimming removes the muscle tension I experience with TD. I don’t have any uncontrollable movements in the water, except for my mouth. That’s pretty much the only thing not in the water, but it’s minimal and not distracting.
That exercise decompresses my body and helps burn off cortisol, which is involved in stress responses.
While we can’t always reduce stress, it’s important to find ways to manage it through exercise (usually light to moderate), mindfulness, or any other way that helps one relax or burn off stress without triggering more uncontrollable movements.
A quick note about stress and TD
There’s a lot of interaction between stress, hormones, neurotransmitters, cortisol, dopamine, and involuntary movements. Stress can make symptoms of TD worse, making stress management — like exercise — a helpful strategy for many people living with the condition.
I’m the facilitator of our virtual support groups [at NOTD], and that experience of connecting with others with TD? The easiest way to describe it is: one, you’re not alone, and two, you’re not ‘crazy’ or some kind of freak. That’s basically what the people who attend the meetings say, too: ‘I know I’m not the only one out here.’
It’s about finding community and support to live with this seemingly not well-known condition. It’s knowing that we have someone we can go to and talk with about this!
Having a community is also important for learning how to be a strong advocate for yourself and your peers. That can be one of the hardest lessons to learn for someone feeling very vulnerable living with TD.
We can also support each other in getting the right medical advice. There’s a big gap between clinicians who know about TD and those who don’t. Not all doctors or clinicians are the same. If you visit one you’re not happy with, go to another one.
Empathy is super important. Understand that a person with TD may be feeling very self-conscious. They’re probably feeling very aware that they may be impacting how someone else feels when they see them.
Hold off and try to avoid placing judgment on that person. Don’t jump to conclusions. And hold a safe space for people with TD.
You’re likely to make a friend and learn something from someone who’s living with an incredibly difficult chronic condition.
April Kraft is a TD Support Specialist with the National Organization for Tardive Dyskinesia (NOTD). She has been living with tardive dyskinesia for nearly 6 years. It has altered her life in a way she could not have imagined. She had no idea what her future would be. Through peer support, she has found hope and purpose.