When Jeff Shair was diagnosed with schizophrenia in 1969, the recent high school graduate was so ashamed of the diagnosis that he went into hiding. “The only people I communicated with were my parents and my brother,” he wrote in a 2018 article in The Patient’s Voice. “Sometimes I would go to a restaurant or movie with my Mom and Dad. But, I spent most of my days listening to records in my basement and going to movies.”

Living with schizophrenia

Schizophrenia is a type of psychotic disorder. It causes periods of psychosis, with the two most prominent symptoms being delusional thinking and hallucinations. It’s estimated that 3 out of every 100 people will experience a psychotic episode at some point. Approximately 100,000 Americans will have one this year.

Antipsychotic medications (also known as tranquilizers or neuroleptics) can keep schizophrenia symptoms in check. And they worked for Jeff for years — until he quit taking them. “I stopped taking my psychiatric medication and felt elated,” he shared in The Patient’s Voice. “I decided I didn’t need to keep seeing my psychiatrist. As a result, I started to hear voices and experienced hallucinations.”

Hallucinations occur when you hear, see, smell, feel, or even taste something that isn’t there. People with schizophrenia may hear voices that tell them to do things or make them believe things that aren’t true. This can lead a person to develop paranoia and delusional thinking. They may wrongly believe that people are plotting against them or spying on them.

Someone who experiences delusions may think that they’re famous or that they run in important circles. Jeff began to believe that he was friends with famed musicians and movie stars. “They told me I was misunderstood and mistreated by the people in my life and those people didn’t realize my true potential,” he wrote in The Patient’s Voice.

Eventually, Jeff believed that he was starring in a movie himself, with friends and strangers taking supporting roles. In The Patient’s Voice, he shared: “I assumed they were given lines and I was left to creatively improvise. At first, I felt exhilarated but quickly became extremely frustrated as the film seemed to go on indefinitely.”

Getting help for schizophrenia

Jeff’s illness worsened, and in 1976, he became convinced that he was starring in multiple movies, all taking place in his beloved city of Philadelphia during America’s bicentennial celebration. He sought help and was hospitalized. It was the first of four hospitalizations that occurred over a period of 50 years.

When he took his medicines as prescribed, the voices, delusions, and paranoia went away. But he always stopped the treatments. “The same pattern was repeated: After a time, I stopped taking my medication, started hearing voices, refused to see my therapist, believed I was starring in a movie and ultimately, was hospitalized,” he revealed in The Patient’s Voice.

Eventually, Jeff found a mental health program and specialist that treated his condition with respect. He no longer felt stigmatized or ashamed. According to The Patient’s Voice article, “The care I received empowered me to do things I never thought were possible. By the early ‘90s, things were getting better. I was working as a teacher, attending college classes, and getting recognized for my volunteer work.”

But just as life was looking up, Jeff encountered a new problem: tardive dyskinesia (TD). This neurological movement disorder is a side effect of some antipsychotic medications. It causes symptoms like repetitive, uncontrollable facial and body movements or tics. People who have tardive dyskinesia aren’t aware that they’re making these involuntary movements.

“I woke up one morning and discovered my cheeks puffing in and out,” Jeff shared in The Patient’s Voice. “Eventually, this turned into constant grimacing. I dreaded looking at myself in the mirror and was startled by my distorted face.” Later, Jeff developed other symptoms like uncontrollable shaking. The condition also affected his ability to walk and breathe.

Approximately 1 in 4 people who take antipsychotic medicines develop tardive dyskinesia. Certain medicines for gastrointestinal and neurological conditions also cause this side effect. There isn’t a cure. Treatments usually include lowering the medication dose, stopping the medication altogether, and/or switching to a different one. But these steps don’t always resolve the symptoms. While most people develop tardive dyskinesia while taking a medicine, it’s not uncommon for someone to develop symptoms years after they’ve stopped taking a medication.

In The Patient’s Voice article, Jeff said his psychiatrist had warned him about this potential medication side effect. “Looking back at my treatment history, my psychiatrist advised me to stop taking the antipsychotic medication before any TD symptoms began, but I didn’t want to sacrifice the great progress I had made with my psychiatric condition. Nevertheless, the medication that helped me function so well ultimately caused my TD symptoms that still persist to this day.”

Overcoming the stigma of tardive dyskinesia and schizophrenia

Jeff was now dealing with two stigmatizing conditions. While the signs of schizophrenia weren’t physically evident, there was no way to control or hide the grimaces, cheek puffing, and other tardive dyskinesia symptoms. “I do get discrimination with it,” Jeff said in an interview with The Future of Personal Health. He worries that people misread his actions. “It could look like I’m angry or upset, but the movements are involuntary.”

People stare, make comments, or seem fearful. “Sometimes when I go to a restaurant the hostess will attempt to seat me away from the main dining room to keep me out of sight,” he wrote in The Patient’s Voice. “Some managers believe my grimacing will make their patrons feel uncomfortable. I wonder sometimes if they think my grimacing means I’m mentally deficient.”

Instead of going into hiding like he did in the 1970s, Jeff became an advocate for people living with tardive dyskinesia and mental illness. His consultant work with the Philadelphia Department of Behavioral Health and Intellectual Disability Services offers a platform to educate others. He’s also active in the Mental Health Association of Southeastern Pennsylvania. His goal is to make the conditions less stigmatizing. “The majority of people with mental illness are not dangerous,” Jeff told The Future of Personal Health.

Support for people with tardive dyskinesia

Jeff also found help through a support group for people with movement disorders. “In the group, members talked openly about their struggles. I realized my symptoms weren’t any worse than theirs,” Jeff wrote in The Patient’s Voice. “I began to come to terms with my condition and accepted my unusual movements as a part of my life.” There are also online virtual support groups like the Inspire Movement Disorders Support Community.

Through the support group, Jeff learned about tai chi, a martial art that focuses on slow, rhythmic movements. “The physical, intellectual, and emotional benefits of tai chi helped me relax and achieve improvements,” he shared in The Patient’s Voice. “I continue to do the moves today as one of my daily disciplines.”

By continually sharing his story and speaking up for people with mental illness, Jeff wrote in The Patient’s Voice that he hopes to “…inspire others who feel hopeless and think they have no future. Finding the right support and treatment may help you discover your passion and inspire others.”

Sources

• For those living with movement disorders, stigma continues. Future of Personal Health. July 2019.

• Psychotic disorders. MedlinePlus. April 2020.

• Paranoia and delusional disorders. Mental Health America.

• Psychosis. Mental Health America.

• Schizophrenia. Mental Health America.

• Tardive dyskinesia. Mental Health America.

• Psychosis. National Alliance on Mental Illness. 

• Tardive dyskinesia. National Alliance on Mental Illness. March 2019.

• Living successfully with schizophrenia and tardive dyskinesia. Patients Rising. January 2018.

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