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Tardive Dyskinesia


Facing the Repetitive Movements

Tardive Dyskinesia

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    Facing Reality: Living With Tardive Dyskinesia

    Reviewed by Hansa Bhargava on January 14, 2021

    Video Transcript

    MICHELLE W.: It started my second year of college. I lost a good friend to suicide, and it just sent me into, like, the deepest depression. I started seeing the psychiatrist, and he put me on the antipsychotics. And that's really when the TD symptoms started. I would sniff all the time. You're always blaming, oh, it's my allergies, or I feel like I'm getting a cold or something. And you just, uh, kind of brush it off I would you know clear my throat some people stick out their tongue. Like, I have a retainer in the back of my teeth. I always play with that.

    I hummed. So if people caught me humming, I would just turn it into a song.

    [LAUGHS]

    [MUSIC PLAYING]

    As I grew older and things got worse and worse, it started being questioned more and more by my family, by my co-workers, by strangers. There was no support. It was just, what's wrong with you? Everyone called me lazy. Um, not lazy, but the feeling of having to control it physically exhausts you. Stress made the symptoms worse. So at work, it would really heighten. And my boss's disgust-- you know, this is an issue. You're going to have to close your door because you're disrupting other employees.

    My psychiatrist said, why don't you go see a neurologist? It was during the COVID-19, so we had to do a teledoc appointment. Well, something went wrong, a glitch happened, and my video of her went out, but her video of me did not go out. In my mind, I was free to do whatever I wanted to. I mean, because you can control it to a certain extent. But then when you're out of that situation, it's like all the symptoms come back.

    Well, she saw it. And she's like, you've got this condition called tardive dyskinesia. I said, you're going to have to spell that for me.

    [LAUGHS]

    She prescribed me some medication. Started taking it. And within a week, symptoms were gone. You don't realize the physical toll the movements or the sounds have on your body physically. I was in pain all the time. I didn't sleep well. And now that the symptoms are under control, I sleep better, I don't hurt, I've got all this energy that I don't know what to do with. I would always think about the people when, you know, oh, I woke up today, and I felt so refreshed. I never in my life felt that until now.

    It's amazing the difference just by being properly diagnosed and given medication. If people were educated, they could have helped me get treatment much sooner, or they would be more understanding. I didn't understand it myself, much less I couldn't explain it to someone else. Being afraid to-- to even go to the doctor and going to the doctor and not fully discussing your symptoms because you're so embarrassed. And that just prolonged the torture that I was going through. And that's the perfect word for it is its extremely painful process.

    But I've started posting it on my Facebook page-- TD Awareness. And then getting on forums about it to see other people that have the same symptoms and condition was mind-blowing because I felt like I was the only one in the world that had this. I was at my sister's house last night, and she said, you're a different person. And that makes me feel so good. People won't notice it because I'll just be another normal person. But to me, to be a normal person would be awesome.

    [MUSIC PLAYING]

    You don't realize the physical toll the movements or the sounds have on your body physically."

    - Michelle W.

    EXPLORE MORE

    Tardive Dyskinesia: In Their Own Words

    The involuntary movements -- twitches, grimaces, lip smacking -- can be aggravating. What it's like to live with this side effect to medication?

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