Tardive dyskinesia (TD) ticks can be more than a momentary disruption. They can completely shake up your life, leading you to feel less confident, more isolated, and detached from doing things you once loved.
Whether the symptoms manifest as subtle twitches or more pronounced, uncontrollable movements, feeling secure in public spaces can be quite the challenge. For many sufferers, the visibility of these tics—especially around those unfamiliar with the condition—can be an even greater challenge.
Although medication changes and lifestyle modifications can help, they’re not a cure-all. Fortunately, that doesn’t mean you have to live in shame or embarrassment!
If you’re dealing with Tardive dyskinesia, and aren’t sure how to explain it to people like coworkers, acquaintances, and even complete strangers, you’re not alone.
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Let’s cover some of the top strategies for reducing misunderstanding and clearing up those unfortunate stereotypes and misconceptions…
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Laying the Foundation
First off, it’s important that you explain what actually causes this condition. Many people may not know, but TD is actually a result of medications, typically antipsychotics or other dopamine-receptor-blocking drugs. In most cases, these drugs are prescribed for conditions like schizophrenia, bipolar disorder, or even severe nausea.
In certain cases, as time passes, these medications can change the brain’s control over muscle movements, contributing to tics of the face, limbs, torso, and beyond. Just like some meds lead to drowsiness, nausea, or other side effects, these medicines likewise have effects on the body and brain.
So let people know. Keep it simple, inform them that this condition is not a choice or habit, but linked to very real changes in neurochemistry caused by medical treatment. Explaining it this way can ensure a less judgmental, more sympathetic conversation.
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Explaining Involuntary Vs. Voluntary
When helping others understand the idiosyncrasies of TD, it’s important that you paint a clear picture. After all, TD is not just some movement you choose to make, or some other tic-related condition. While similar to some neurological dysfunctions, TD is its own unique movement disorder.
Describe the type of movements so people can better grasp the full range. For instance, you might explain that these movements vary widely, from lip pursing to eyelid flickering, head-jerking, torso swaying, and twitching fingers.
If people ask what causes these movements, it’s a good idea to let them know that it varies. The tics can come on depending on fatigue, stress, and oftentimes, without a known trigger. Unlike, say, a yawn or stretch, these involuntary movements do not serve any real purpose. This is why they may sometimes seem unpredictable and strange.
Again, distinguishing tardive tics from voluntary movements is a very critical step in fostering understanding. To an untrained eye, a sudden grimace or awkward jerk might look deliberate. Some people might equate it to something like a wink, a shrug, or even a sign of impatience.
But of course, TD does not come with intent. Think of a hiccup or shiver. These responses are automatic and uncontrolled by the person experiencing them. In other words, you’re not giving your body permission to do this – it just does it!
Now, that’s not to say that these movements can’t be treated or reduced, but when they do occur, it’s never because you’re doing it on purpose. By explaining that these movements are not voluntary or attention-seeking, others can adjust their perceptions and stop making snap judgments.
These aren’t signs of nervousness, intoxication, or even a lack of self-discipline, they’re something else – and making that clear is paramount.
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Noting Similarities & Differences
Let’s face it, TD is not a condition most people have heard of. This is why it’s a smart idea to relate the condition to other better-known conditions, such as Parkinson’s disease. Most people have heard of Parkinson’s and realize that it is related to neurological decline.
So use this as a starting point.
Gently correcting incorrect ideas helps realign others’ views with reality. If we look at Parkinson’s, we typically see symptoms such as tremors and stiffness. You can explain that while these issues are also involuntary, they’re different from symptoms of TD in one main way: TD is more fluid and repetitive.
If you’d like to really drive the point home, you can even show inquiring minds videos on Youtube or elsewhere highlighting the physical ‘look’ of TD and conditions often confused with it. By being open to questions and maintaining a calm demeanor, you can quickly transform confusion into curiosity and, ultimately, support.
Given our highly socialized world, fostering this understanding is key. After all, living with tardive tics means learning to live in a body that sometimes acts on its own accord, which can be both frustrating and exhausting at times.
Sometimes, the tics can come on at the worst possible moment, such as in settings where you’re expected to be quiet or still. Rather than be embarrassed in these moments, use them as an educational opportunity.
You may even suggest small acts of kindness—like ignoring a twitch rather than staring, or continuing a conversation without pause—to help ease the tension. Let people know that a more relaxed environment can actually reduce the tics, so a calm reaction from others is always preferred.
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Being Honest & Upfront
Not all people with TD experience the same movement issues. In fact, many sufferers with TD may only have mild tics, like a faint lip tremor or occasional blink. While these movements may draw attention and prompt questions, they’re not nearly as blatant as other movements.
Some individuals with TD, on the other hand, may experience very pronounced, impossible-to-ignore tics. If you experience a more severe variety of tics, it might be a good idea to explain your condition upfront.
Even before you exhibit a tic, calmly let people know. Acknowledging the visibility upfront, paired with a confident explanation, is a great way to make everyone feel more comfortable. Overall, you don’t want to dwell on your tics. You simply want to provide others with the information and context they need so that everyone can function normally.
By matter-of-factly explaining your condition, you can get the hard part out of the way and go on about your day!
Because at the end of the day, that’s what all of this is about. Ultimately, teaching others about TD is less about erasing every trace of embarrassment and more about creating a connection. Although the condition may never fully fade, you can certainly take ownership.
Whether it’s friends, family, or even random strangers, a calm, fact-based explanation can go a long way.
Kindness over judgment.
So, don’t let embarrassment overwhelm you. Don’t let your internal thoughts isolate you or detach you from people and things you love. By covering the basics, establishing the medicine link, illustrating the tics, and clarifying misconceptions, you’ll not only feel much better but help others feel better as well!
