Tardive dyskinesia (TD) is a possible abnormal movements side-effect of antipsychotic medications. TD may cause involuntary movements in the face, extremities and body.

After decades of not being treatable, since 2017, FDA-approved treatment for TD is now available. TD movements differ from other involuntary movements including drug-induced parkinsonism, akathisia and dystonia, and TD movements are treated differently.

Editor-In-Chief Bethany Yeiser, BS
Deputy Editor Henry A. Nasrallah, MD
Karen S. Yeiser, RN
David E. Yeiser, M. Div
Robert Cotes, MD
Mary Beth De Bord, JD
Megan Good, MD

Danielle Johnson, MD
Peirce Johnston, MD
Matcheri Keshavan, MD
James A. Hunt, JD
Carol North, MD, MPE
Stephen Rush, MD
Jeffrey Strawn, MD
Rajiv Tandon, MD

Carol S. North, MD, MPE, DLFAPA
Adjunct Professor in Psychiatry
(volunteer), The University of
Texas Southwestern Medical
Center, Dallas, TX, USA

The Elusive Diagnosis of Tardive Dyskinesia in Psychiatric Practice

Tardive dyskinesia, or TD, is an involuntary movement disorder that can occur after treatment with antipsychotic medication. This condition can be hard to reverse and may cause embarrassment, stigma, social isolation, reduced quality of life, and problems with daily functioning. A published review of 41 studies of TD with 11,493 patients taking antipsychotic medications found that 25% developed TD.¹ TD differed across studies and groups of patients but was highest among state psychiatric hospital inpatients.

To examine TD in a real-world setting, we did a study at a large community mental health treatment center, Metrocare Services, in Dallas, Texas.² At the time, this facility provided outpatient care each year for serious mental illness and developmental disabilities to 62,000 adults and children. We reviewed medical records of more than 120,000 Metrocare outpatients treated from 2013 to 2017. Nearly one-fourth of the patients had a psychotic disorder, and one-fourth were children under 18. About 80% of both adults and children with psychotic disorders were prescribed antipsychotic medication.

A widely used tool to assess abnormal involuntary movements, including those associated with antipsychotic medication use, is the Abnormal Involuntary Movement Scale (AIMS).³ This scale was built into Metrocare’s medical record system, reminding providers to check for abnormal movements at least once a year. However, only about half (51%) of the patients receiving antipsychotic medication had AIMS information entered in their medical records. In the records that were completed for patients prescribed antipsychotic medication, only 1% of adults and almost no children were found to have TD, typically affecting the face, extremities, and trunk. Only one-third (32%) of the patients with a positive AIMS test had TD diagnosed by the provider. In summary, the public sector workers in our study did not always complete and record AIMS testing, and they rarely identified TD.

Our study used information recorded by busy providers as part of their normal outpatient care in a real-world setting. Another study also using medical record data found TD in only 1%-2% of patients.⁴ The rates found in these clinical studies are substantially lower than the general 25% rates¹ reported by research studies dedicated to systematic recording of symptoms. The findings from these clinical studies suggest that clinicians may not be assessing for TD or are missing it when they do. This may be because they do not have enough time or staff to do regular formal movement checks.^3,5

These findings matter for the many patients in public sector psychiatry and general psychiatric care settings with psychotic disorders who are prescribed antipsychotic medications. Because medications to treat TD are now readily available, it is more important than ever to identify and treat TD. This may be accomplished by training clinicians to systematically assess for TD, using better medical software to track abnormal movements, and giving clinicians enough time and staff for identification and treatment of TD.

References

1. Carbon M, Hsieh CH, Kane JM, Correll CU. Tardive dyskinesia prevalence in the period of second-generation antipsychotic use: a meta-analysis. Journal of Clinical Psychiatry, 2017; 78:e264-e278.

2. North CS, McDonald K, Hunter J, Burruss J. Prevalence of tardive dyskinesia in an electronic medical record study at a large community mental health treatment center. The Primary Care Companion for CNS Disorders, 2022; 24(4):41627.

4. Kane JM, Correll CU, Nierenberg AA, Caroff SN, Sajatovic M. Revisiting the abnormal involuntary movement scale. Journal of Clinical Psychiatry, 2018;79(3):17cs11959.
5. Loughlin AM, Lin N, Abler V, Carroll B. Tardive dyskinesia among patients using antipsychotic medications in customary clinical care in the United States. PloS One, 2019; 4;14(6):e0216044.

5. Caroff SN, Yeomans K, Lenderking WR, Cutler AJ, Tanner CM, Shalhoub H, Pagé V, Chen J, Franey E, Yonan C. RE-KINECT: a prospective study of the presence and healthcare burden of tardive dyskinesia in clinical practice settings. Journal of Clinical Psychopharmacology, 2020; 40(3):259-68.

Kody Green

Overcoming Schizophrenia: Kody Green

Kody Green was born in 1994 in rural Wisconsin. He has a younger brother and a younger sister, and a mother who struggled with schizophrenia throughout most of his life. He never knew his father, who died in a car crash when he was a year old.

Kody’s childhood was difficult. He felt he was his mother’s caregiver, and remembers having to “grow up” early on to look after her and his siblings. Throughout his childhood, he never had enough money, and pretended he was not hungry at school when he didn’t bring a lunch. He remembers his mother’s applications for financial assistance for low-income families.

Despite a difficult home life, Kody always did well in school, enjoying theatre and music, and running track and cross country. From a young age, he maintained a supportive circle of friends who made good choices and avoided alcohol and drugs. At age 15, Kody also met his future wife, Allyson, at a rival high school.

As Kody was finishing high school, in 2013, his mom was finally diagnosed with schizophrenia and began antipsychotic medication, but much cognitive damage had already been done.

Kody planned to stay home to care for his mother after graduating from high school but finally realized that his mother was stable enough for him to move on. He and Allyson decided to rent an apartment near Western Technical College in La Crosse, where Kody began classes to become a choir director or music teacher.

Kody did well until the end of his first semester of college, when he began to believe that other people were watching him, and that his wife was trying to sedate him through his food, with plans of “putting him away” in a hospital or psych ward. He refused to eat or drink anything he suspected she may have touched. He remembers hearing voices, which soon became overwhelming, and hearing other noises such as loud sirens that he eventually realized others could not hear.  He saw people around him barely defined and faceless, and felt crawling sensations on his arms. Kody was very aware that his mother’s schizophrenia was a genetic condition, and was always looking for signs of psychosis in himself. But when it actually began happening, he never suspected his problem was schizophrenia.

Terrified of falling asleep, and desperate to drown out the visions and voices, Kody turned to both prescription stimulant drugs and cocaine, which he bought from friends in La Crosse. Losing his cognition and ability to think rationally, he found himself failing his classes. Soon after, influenced by the drugs, and having not slept for over thirty hours, he accidently wrecked his car, and was badly injured. Following the crash, he entered the criminal justice system. He would go through a formal trial, and spend close to a year in jail, from 2014-2015.

While in jail, Kody began to suspect that something was physically wrong with him, and that it was serious. He recognized that he was having cognitive problems, and wondered if he had chronic fatigue syndrome. Though he was not suspecting he had schizophrenia, he lived with voices and delusions, believing that he was in a coma, and that life in the jail was not real. Isolation made his symptoms worse.

Because the correction officers at the jail saw Kody as a drug-seeker, his continued pleas for a physical assessment were ignored. But Kody spoke with other inmates and found that many of their stories paralleled his own. Kody remembers the other inmates recognizing he was unwell, protecting him, and making him feel safe. When he struggled the most, they provided the support he needed to stay out of the jail’s psychiatric ward.

While in jail, Kody’s mother and Allyson spoke with him over the phone every day. They visited him in person every other week, which was as often as they were allowed. On Kody’s release, he was determined to work together with a physician to obtain a diagnosis and treatment for whatever was wrong with him. He soon began medication for schizophrenia.

Kody’s first antipsychotic medication helped significantly, but he had side effects such as tardive dyskinesia, weight gain, anxiety and heart palpitations. He would spend five years going through various medication trials until he found one that worked well for him with the least side effects. Two years following his release from jail, he married Allyson and bought a house. Though Kody was committed to a psychiatric hospital for a few brief stays, both Allyson and Kody’s mom cared for him, preventing him from spending much time in psychiatric facilities.

As Kody recovered from schizophrenia, his goal was to find employment despite his criminal record. He finally landed a production job making cheese, where he worked for two years. He then worked for a year as an organic dairy retailer. During the beginning of the COVID pandemic, he changed jobs again to do customer service, and then began selling furniture, which he greatly enjoyed. While selling furniture, Kody was given flexibility with his hours, and able to take extra time off if he was feeling symptomatic or needed extra medication.

In 2019, Kody put up his first personal video about his journey through schizophrenia on TikTok. The next morning, Kody woke up to see he had 10,000 followers. As the pandemic began, he recognized the great need for mental health resources on the Internet, and found great fulfillment and success in making content that would educate and encourage people struggling with isolation, anxiety, depression, psychosis and other mental health conditions.

Today, Kody’s TikTok channel “Schizophrenic Hippie” has reached over a million followers. Kody left his job as a furniture salesman in 2024 to work full-time creating content and doing speaking engagements. Today, he has been featured in USA Today and Men’s Health. His proudest achievement is his recently released book titled Minds Over Meetings: A Personal Perspective on Wellness in the Workplace.

Zach Feld

Finishing College and Seeking a Career: Zach Feld

My schizophrenia story starts in fall 2008. I started school at Kenyon College right after high school. My high school was a small, gifted program, and I had done well enough to get in the year Newsweek called Kenyon a “New Ivy,” so my future seemed bright. At first, things seemed normal for my freshman year. I was going to class, doing my homework, etcetera. After a while, however, things took a turn for the worse. My grades slipped dramatically; I struggled socially; and I began having thoughts of paranoia regarding my friends and roommates. At one point I believed they were conspiring to drive me to suicide or at least have some kind of angry outburst.

By spring of my freshman year, I withdrew from school and went home. Kenyon followed me in a sense. I began hallucinating my friends and other ghosts of Kenyon in my childhood home. During that time, I tried to continue my education by taking courses at a community college, but the paranoia and hallucinations were large roadblocks. Around the same time, my grandmother on my mother’s side passed away, and I hallucinated her for a while. I remember being so sick that I giggled at her funeral because of intrusive thoughts.

Eventually, I had an outburst due to a major psychotic break. The outburst was a culmination of distress from changes in the way my mind had been operating, including increasing visions and other imaginary phenomena. When I saw my mother one evening, I felt as if she was invading my mind. In frustration, I smashed a plate on the floor which was filled with blintzes Mom had made for dinner. I yelled, “Get out of my head!” at her, and she called the police.

I wound up at the Lindner Center of Hope (a psychiatric facility in Mason, Ohio) for about a month. I wasted away at the Lindner Center, watching the charge nurse write the date every day on a large display pad. This helped me regain a sense of time I had lost from spending days at home not knowing the time or date. They put me on medication, but when I got home I had anosognosia (lack of insight) so I was non-compliant with my meds.

I lasted a short period of time off meds. Before things worsened, I took some woodworking classes, played a lot of Call of Duty, and worked a summer gardening job my high school friend got for me. By the end of summer 2011, after my job ended, I was at the Lindner Center again. While I was getting help, I missed my brother’s wedding, and I had few visitors because everyone was preoccupied with the wedding. When I was discharged, I had my head shaved to a two-inch haircut from the shoulder length curly hair I had and was sent off to a work therapy farm in Massachusetts called Gould Farm. It is not too far from the site of the wedding I missed.

At Gould Farm I participated in farm work as therapy. I started on the forestry and groundskeeping team and eventually moved on to work in the kitchens and with livestock. The age-old medicine of chopping wood and carrying water to build one’s self up was a very literal part of my treatment. There’s nothing else like hard outdoor physical labor to ground you and force you out of your head and into the environment. I did physical labor not only thanks to work therapy but by my own volition. I had started out randomly doing pushups at the command of hallucinations and by the end of my stay at Gould Farm, I was a regular user of the farm weight room, and I was hallucination-free thanks to being stabilized on meds. A self-motivated exercise routine that was my own idea was an important step in my recovery because it gave me a sense of control over my own self-improvement that wasn’t being handed to me from an outside source. Others self-medicate with cigarettes and drugs. I was lucky those had never appealed to me. Whatever sparks of self-starting in the recovery process one has are important to keep and nurture because, otherwise, you’re left with other people’s motivations and no motivation of your own, which leads to non-compliance.

The prescribed meds were a problem for me, however. The psychiatrist noticed some tardive dyskinesia and it upset me so much I started “cheeking” my meds (storing my meds in my mouth rather than swallowing them) in the medication line. I regularly butted heads with the resident psychiatrist and was also getting fed up with the work program. Something had to change so I took drastic measures. I made an attempt on my own life by drinking Simple Green—the cleaning solution—which as luck would have it is non-toxic. I was rushed to the hospital after immediately alerting the night staff of my impulsive behavior. I spent a week at the Pittsfield Mental Hospital until I ended up back at the farm. Later that year, I eventually ended up back in my hometown.

Back at home, I was treated by the Assertive Community Treatment (ACT) team at Greater Cincinnati Behavioral Health (GCBH) around the time of my fourth and final hospitalization. The ACT team helped me get resituated in my hometown. They reminded me of psychiatric appointments and assisted me as I searched for my first apartment. Another thing they did was get me involved with GCBH job coaching. They were a series of friendly, caring, and understanding faces that kept me from isolating at home by visiting me regularly or having me drive to them at the GCBH office. I was hospitalized this one last time and during my hospitalization, the ACT team had a hand in continuity of care between the hospital and GCBH. I stabilized on a four-week injection of paliperidone (Invega Sustenna) so that I didn’t have to think about taking oral medication. I ultimately ended up taking daily divalproex sodium pills as well, but the Invega does the majority of the work, so if I miss a day of the oral medication it’s not a tragedy. I also have a PRN (as needed dose) of oral risperidone today, in case of occasional flare-ups in symptoms.

Things were neither here nor there for a while. I reunited with my biological father who sought me out (I was adopted at birth), and I learned that schizophrenia was inherited from that side. It is a part of the mosaic of contributing factors to my illness. I gave cognitive enhancement therapy a shot and worked a little bit of retail. Eventually, I went back to college, Xavier University, when I felt recovered enough in fall of 2015. The university provided accommodations to work around my illness and learning disability from high school, and I finally graduated in summer of 2022 with a degree in economics and sustainability. For my capstone project, I chose to write a 20-page paper about Gould Farm and present it over Zoom. I looked at the recovery program from an economic, environmental, and social perspective. A big part of my capstone was highlighting the need to return to work after going on disability for a mental illness and showing how meaningful work is important to recovery, finances, managing mental illness, and becoming less of a burden. There is an economic story to be told about disability, work, and upkeep of standards of living that can, sadly, include stories of joblessness and poverty when personal and community failures happen. There is also a beacon of light when successful treatment is administered.

Towards the end of my educational career at Xavier I returned to Gould Farm for an alumni weekend and spoke on a panel about some of the triumphs in my recovery. Revisiting places of recovery can be hard because they are so charged with memories of traumatic times, but it can also help the healing process towards later stages of recovery as a reminder of how far you’ve come.

These days I spend my time volunteering at a food pantry where I’ve been working for a year now. I bring my mom’s dog to the dog park, paint, chauffeur an elderly lady, job hunt, and look for ways to further my career after my recent graduation. I don’t know what the future holds, but I have learned how to manage my illness and feel it is largely behind me now. There are so many institutions that have helped me find hope, including the Gould Farm, the Lindner Center, and Greater Cincinnati Behavioral Health. I particularly like the Gould Farm slogan, “We harvest hope.”

I still go to doctors’ appointments and work with a case manager, but I no longer am involved with Assertive Community Treatment because I have graduated from that. I still have occasional residual symptoms, but for the most part, I am more comfortable and compliant than when I started. Some of my breakthrough symptoms lately include animation of paintings I have up on my walls when it’s getting close to my injection time and other hallucinations like the occasional voice. Schizophrenia is a thief of sanity, but with the right treatment, care, and management it can be caught. The mental soundness lost from schizophrenia can be recovered and returned; damage can be mitigated.

www.gcbhs.com

www.gouldfarm.org  

Meghan Caughey

Artist, Professor and Author: Meghan Caughey

View the condensed story in Newsletter Issue 24

I felt invincible when I was a little girl growing up in Atlanta, Georgia. My big brother would take me on hikes by the creek near our home. I played violin and cello and was a page in the Georgia State Legislature, where I lobbied for civil rights and against the war in Vietnam. I didn’t understand that my father had alcoholism or that anything was different in my family.

I assumed that I could do anything, but when I was 12 and my family moved to San Antonio, Texas, I was suddenly in what seemed like a strange and foreign land. In high school, I spent most of my time drawing and playing my cello, and I loved to spend time in nature. When I was 16, I discovered Zen Buddhism and explored meditation, and I spent most of my time alone.

When I selected a university, it wasn’t about the academic qualifications, but about how easily I could access the wilderness of the Rocky Mountains. I believed I needed solitude in the wilderness at the high altitude near the tree line. That was how I began college at Colorado State University. I studied art and spent as much time backpacking in the Rockies as possible.

Early in my first term, I had an experience I could never have predicted and will never forget. One afternoon in an art history class, I heard faint, intrusive, cruel voices that no one else could hear. When I struggled to return to my dormitory, the people I saw didn’t look normal— their faces looked like enormous insects. When I was finally in my dormitory room, and I looked at myself in the mirror, I was no longer human. I had turned into an awful beast. Although I tried my best to continue my studies and backpacking trips, my world was fearsome. Finally, one snowy night, some other students who saw how disturbed I was took me to the student health center. I was given the medication chlorpromazine (Thorazine) there, and I slept in a darkened room. Eventually, I was taken to see the psychiatrist. He sternly looked at me across his desk, and pointing his finger at me, he condemned, “You have schizophrenia.” Although I didn’t know what schizophrenia was, it was clear that I was doomed.

In the following years, I struggled to complete my studies and was often hospitalized for my symptoms, which were visual, kinesthetic and auditory hallucinations. I returned to San Antonio, where my parents were, and enrolled at Trinity University. I switched my major from art to psychology because I needed to understand what was happening to my brain. At one point, I was deeply discouraged and contemplating suicide, and I was able to do an independent study course in suicidology. I got college credit to obsess about killing myself. The irony of this was inescapable. My doctor would give me antipsychotic medications, but I hated how the side effects made me feel, so I usually would stop taking it and then end up in the psychiatric hospital. I would have to stay in the hospital until I could be stabilized by retaking the medication again. I went in and out of various hospitals but eventually graduated with a bachelor’s degree in psychology.

I decided on becoming an art therapist to combine art and psychology, so I went to graduate school in Vermont. It didn’t take long for my psychotic symptoms to become severe, even though I was working as an art therapy intern at the Vermont State Hospital. There, I saw a patient who had full-blown tardive dyskinesia, a serious movement disorder caused by the same medication I was taking. The sight terrified me. I ended up in the psychiatric hospital and, for the first time, was tied down with four-point leather restraints on my ankles and wrists. I had no memory of how I ended up in restraints, but it would not be the last time. Being tied down for hours is a profound experience.

I was told I would have to leave school and be treated in a residential psychiatric program. I resisted this, but eventually, it became unavoidable. Because I detested psychiatric medication, I ended up in an unusual program in Oakland, California. It was called the Cathexis Institute, and they claimed they could cure schizophrenia without using medications. Instead, they believed that psychosis was caused by faulty parenting and the cure was in “reparenting patients.” They physically held adults in the therapists’ laps and gave grown adults baby bottles of warm milk. They even would put adult patients in baby diapers, and the adults would regress to infancy and be cared for, including having baths and diaper changes. There was also the practice of corporal punishment if a patient broke a rule. My mother was told she was “schizophrenogenic,” meaning she had created my illness, and the program blamed her for inadequately nursing me when I was less than three months old, and said she was what had caused my disorder.

I stayed in this program because I was very motivated to get well, and they didn’t make me take medication, but eventually, I ran away. I ended up living in a cabin in the coastal mountains south of the south San Francisco area, and I intensely focused on my art.

I went in and out of psychiatric hospitals. I detested the medications because they caused movement problems, shaking, blurry vision, swelling of my breasts, lactation, dry mouth, and excessive sleepiness. And I especially detested the inevitable weight gain—this all made it very hard to draw and paint which was my passion, and I felt ashamed of myself—I didn’t understand why I had these side effects.

Eventually, I was determined to go to art school, and I finally completed an MA in drawing and painting and then an MFA in pictorial art. I did this despite the frequent hospitalizations.

I met a young man and fell in love, and we got married and moved to Santa Cruz, California.

In the first year of our marriage, I made a significant suicide attempt—being married could not ease my emotional pain. We moved to Oregon and, after seven years, were divorced. This was followed by years of many hospitalizations and suicide attempts. I have been hospitalized well over one hundred times, sometimes in the Intensive Care Unit, after trying to kill myself.

When not in the hospital, I attended a day treatment program. One day in the waiting room, I found a medical newsletter that listed schizophrenia medications that were being researched, and one caught my attention. It said it didn’t cause weight gain like most other medications, and it was in Phase III trials. I immediately had the feeling that this medication was going to change my life. I was 48 years old, and no one thought I would ever get out of the wards of psychiatric hospitals. With many calls to the drug company that made the medication, I got into a Phase III clinical trial in Southern California. I faithfully made the 16-hour trip from home to the California hospital every month for two years. I lost over 70 pounds, and my psychotic symptoms disappeared. And, remarkably, I started to experience a new feeling—I felt pleasure, for the first time in many years.

I stopped going to the hospital. The drug company trained me in public speaking. They paid me to fly across the country and travel in limousines to give presentations at medical conferences and mental health advocacy events.

Eventually, I pursued a career in mental health advocacy and peer-delivered services, services in which persons who themselves have recovered from their personal mental health challenges get special training and are able to work as peer specialists helping other persons who are still struggling with their problems. The peer specialist can sometimes empathetically connect with others who are having a hard time and because of their own experience, the peer specialist knows viscerally how to help.

No one had ever thought I could work, but my career began at age 50, even though my psychiatrist said I “was too sick to work.” I designed and directed mental health programs in Oregon as well as nationally. I finally ended up in Portland, Oregon, as senior director of peer wellness services at a large health nonprofit.

Now I am also a clinical assistant professor at the Oregon Health and Science University, Department of Psychiatry. I train psychiatry and doctoral residents in the Public Psychiatry Training program and also work with a suicide prevention program. I also have a consulting business.

In 2021 I had Neuroleptic Malignant Syndrome (NMS) caused by the antipsychotic medication that had saved my life. Because I can no longer take it, I have occasionally had ECT (electroconvulsive therapy). I am a survivor.

I continue to make art, play the cello, and write. I write poetry and essays. My memoir, Mud Flower, Surviving Schizophrenia and Suicide Through Art (2021) has won 12 book awards. My work has been shown and published internationally. I’m currently working on Making Art from the Lap of the Universe. In 1998 I received a Buddhist lay ordination and was given the name, Jisho, which means compassion for all living beings. This describes the motivation and purpose of my work.

Last year, I trained a cohort of peer wellness specialists in Cape Town, South Africa, and this year they are calling me the “Mother of the Program” which pleases me immensely.

Is it possible to heal from schizophrenia? I honestly must say that sometimes things can still be challenging, but it is possible to do something that may seem impossible to the average person. One does not have to accept the label of “mental patient’ if one insists on imagination and perseverance. It may not always be easy, but it is worth claiming one’s freedom!

Winged Being Six

Meghan is currently working on a series of drawings for her new book in progress titled “Winged Beings: Marking Art from the Lap of the Universe.”

The drawings are pen and ink and charcoal on paper, 30″x 40.” I just invite the images to arise from my unconscious, and they basically draw themselves. I learned this way of “free drawing” when I was briefly in training to become an art therapist. The unconscious draws the picture.

meghancaughey.com

mudflowerbook.com

Dr. Craig Chepke, Member, Board of Directors, The CURESZ Foundation, Private Practice Psychiatrist and Adjunct Assistant Professor of
Psychiatry, University of North Carolina School of Medicine

Tardive Dyskinesia: Impact on Patients’ Lives

I was teaching a psychiatric physician assistant about Tardive Dyskinesia (TD) recently, and he told me his clinical supervisor, a seasoned psychiatrist near retirement, had expressed the sentiment, “I don’t know why everyone gets so worked up over TD— it’s nowhere near as bad as I used to see it in the state hospital. You young people just have too much of an emotional reaction to things.” America has recently struggled with a long-overdue reckoning with social injustice, and I hope that the medical field can also change how it responds to the suffering people with TD endure as well.

There are profound social and occupational consequences that people with TD face. One of my patients is a smart, hardworking 49-year-old woman who works in an office setting. She’d long felt she was hitting “the glass ceiling” trying to climb the corporate ladder as a woman in a male-dominated profession. When she developed TD, she was terrified it would be yet another barrier to her superiors and coworkers taking her seriously. She was so self-conscious that she might be having involuntary facial movements without her noticing it, she set up her smartphone at her desk to record her face all day long. She would scrub through the video at lunch or after work, and at any sign of movement, she’d begin crying and despair that she’d never achieve her career goals.

She remarked that she felt lucky that she had a good job when she developed TD because she didn’t think anyone would hire her for even an entry-level position with TD. I have had other patients with TD feel discriminated against when applying for both blue- and white-collar jobs, and a recent clinical trial studied this situation¹. Actors were filmed participating in a scripted interview that had two versions: one in which the actor imitated facial movements consistent with mild to moderate TD and another in which he did not. The 800 people were evenly randomized to watch either the imitated TD version or the non-TD version, and all participants were asked questions about their impressions of the interviewee in regards to employment, friendship, or dating.

The study’s results were disheartening, if not surprising. While about 65% of people shown the non-TD version felt the interviewee would be suitable for a client-facing job, just 25% of people who watched the same actor say the same words in the same way— but with apparent mild to moderate involuntary facial movements— thought he would be appropriate for the same job. The study also showed the participants perceived the actors mimicking TD as significantly less interesting, less friendly, and less favorable dating partners.

The 65 years that preceded the approval of VMAT2 inhibitors were filled with futility in treating TD, until minimizing or ignoring it became a habit. As with any suffering we turn a blind eye to, there are consequences we don’t perceive until a light is shined on them. Healthcare providers cannot give our patients with TD a job. Still, with safe and effective treatments now available, there is at least one form of social injustice we can remedy far more easily than most of those our society currently faces.

1. Ayyagari, et al. “115 An Experimental Study to Assess the Professional and Social Consequences of Mild-to-Moderate Tardive Dyskinesia.” CNS Spectrums 25.2 (2020): 275-275.