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How I Explain Tardive Dyskinesia to Others

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When I was first diagnosed with bipolar disorder, my psychiatrist and I did trial-and-error with a lot of medications. But one we found to be really effective was an anti-psychotic that helped manage bipolar disorder, especially manic symptoms. It was a perfect fit for me. My symptoms decreased significantly, I had very few mood swings, and even those were manageable. And at first, I didn’t have any side effects. What could be better in a psychiatric medication!

Well, eventually a side effect did develop. I didn’t even know it was a potential side effect because it’s so rare. I don’t blame my doctor for not telling me about it. It was so rare, I didn’t expect her to read the entire list of potential side effects.

After being on the medication for about a year, I noticed I had developed a habit of occasionally blinking really hard. I didn’t think anything of it, I thought it was just a weird habit I’d picked up. Even when it didn’t go away I didn’t really notice it. But I went to visit my psychiatrist one day (a different one from my first), and he asked me about it. I looked at him kind of funny because I didn’t even realize I was doing it. I explained it had been going on for a while, but I got used to it. He was silent for a second, flipped through the files he had gotten from my first psychiatrist, then asked me a few questions about it.

I told him it had been going on for at least a month, probably at least two and it wasn’t debilitating in any way. I didn’t really understand why he cared, it was just a weird habit. But then he told me that I had developed a condition I had never heard of: tardive dyskinesia. An incredibly rare movement disorder, it is a side effect of anti-psychotic medications that causes facial tics, like hard blinking and abnormal facial expressions. When he told me, I threw my hands in the air, slumped into the couch, and just said “of course, another diagnosis.”

Since then, I’ve gone through good and bad times of it. He said it should go away in a few months. That was over a year and a half ago. I saw a neurologist, and she said after a year, it was incredibly unlikely it would go away, and that it was likely permanent, something even more rare than developing the condition in the first place. Well, it’s been much longer than a year, and I still have it. One thing I have learned throughout my mental health journey: there’s no point in denying or getting angry with diagnoses. You can either get bitter and let that poison your mental state, or accept this is reality and adjust to it as best you can. Thankfully, I chose the latter.

Abnormal facial tics are something people rarely see in someone, and it can either confuse people or cause them to get confused. I’ve gotten a number of questions when people see it:

Are you OK?
What’s wrong?
Is there something in your eye?

These questions are well-intentioned, but responding to them is awkward. If I just say “yeah, I’m fine,” but then continue to do it, people are more likely to focus more on my face moving than what I’m actually saying. Sometimes I do respond and say “I have a movement disorder that causes my face to move weird.” This often makes people feel uncomfortable or apologize for asking, and I always tell them not to be sorry. I would be curious if I saw it too. And the conversation usually shifts to them wondering more about it, and I take it as an opportunity to teach people about movement disorders. Now, I have also gotten some rude and disrespectful questions that people really shouldn’t ask:

Do you have Tourette’s or something?
What’s wrong with you?
Why are you doing that?

Again, these questions aren’t usually ill-intentioned. But I also take that as an opportunity to educate people about how to respond to people with movement disorders. In general, this is my advice: don’t ask. Not everyone is as secure about their movements as I am, and asking about it can make people uncomfortable or insecure. If you see someone moving in a weird way, unless they’re in pain or looking like they need help, it’s best to just treat the person like what they are: a person.

A movement disorder doesn’t make anyone less valuable than someone without one. We’re people too, we just have a different kind of challenge in life. But after explaining to my family my new diagnosis, my brother asked me a question that I totally understood, coming from a family member: what is it like?

At first I wasn’t sure how to answer. But this is what I said: it’s kind of like breathing. When you breathe, you don’t need to consciously tell yourself “inhale now, exhale now, repeat,” it’s just one of those things your body does naturally. I compare it to that. When I blink hard, I don’t need to think “OK, blink hard now,” or “OK, blink regularly now.” It just sort of happens. And as of right now, that’s the best way to describe it, and it’s pretty accurate, at least for me.

Overall, movement disorders aren’t fun, and they can be a little bit embarrassing sometimes. For those who do have movement disorders: I may not have your exact diagnosis, but I do know what it’s like for my body to do things I don’t tell it to. I know how frustrating it can be, and I am sorry you are going through that. But I know you’re strong enough to persevere, and I hope you know your diagnosis doesn’t define you.

For those of you without movement disorders: I encourage you to be sensitive to those of us with movement disorders. If you see someone moving funny, don’t judge them, don’t point it out and don’t try to fix it. If you see someone moving pretty significantly and out of control, offer them help, because that could be an emergency. But if you see someone shaking, blinking hard, or twitching a bit, “read the room” before saying anything. Respect that person’s situation by not pointing it out.

If that person decides to share their story with you, feel honored that they share something so personal with you. And depending on how you know that person, ask them if you can ask you questions just to learn a bit more. But even with this, be sure to value sensitivity and respect overall. We are just trying to live our lives and walk our journey through life, same as you. Let’s all take it one step at a time, and respect people if they move a bit differently.

Getty image by Kieferpix.

Originally published: June 8, 2020
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