Maybe you have seen me? As a patient with tardive dyskinesia (TD), you may remember me for my symptoms that are misunderstood. The uncontrollable, repetitive body movements of my face, tongue, and limbs draw attention to me. I receive scrutiny that is embarrassing. People stare at me with my involuntary movements and make incorrect assumptions. “Are they acting out? Are they under the influence of drugs?” People looking at me but not seeing me is common. It still lacks the understanding of me and my condition that I wish others had.
TD can be caused by medications like anti-psychotics or antidepressants, stimulants, anti-convulsants, and certain gastrointestinal drugs, according to myth-busting research conducted by experts.
I followed my healthcare provider’s advice over the years to take medication for my primary health concern, only to develop TD just as I was getting better from the initial causation medication I was on. I was devastated and upset when this happened.
I cannot control my TD movements nor the stares I get because of them. The TD movements that I experience are completely involuntary. Abnormal movements of the tongue, lips, face, trunk, and extremities are part of what identifies me now. But the experience of TD also includes abnormal respiration, swallowing difficulties, and other forms of tardive syndrome, such as tardive sensory pain that can affect the inside of the mouth and the genitalia in some women.
I did not have to be schizophrenic or have bipolar disorder to develop TD. Personally, I’ve never had a schizophrenic symptom or a bipolar disorder diagnosis. Some of us who have TD don’t even have any mental health diagnosis. This is true of those of us who took antipsychotics for primary insomnia or other dopamine receptor blocking agents for nausea or gastroparesis.
More medication could help or hinder. Sometimes, more drugs make TD worse. Sometimes they make no difference. And sometimes they hide the TD symptoms temporarily for a while or even indefinitely before we as patients present with them, often after having trouble getting a TD diagnosis or when trying to taper off the medication that caused the TD in the first place.
There is no clear-cut answer to this. However, there are some self-help techniques and alternative therapies that can potentially help symptoms like mine due to TD. Nevertheless, the TD symptoms are embarrassing and lead to my social withdrawal, physical pain, and severe disruption of my daily tasks, like eating or walking.
This is how TD controls my life and affects my daily life functions. I hope that you realize that my TD movements are not “minor quirks.” They impact my ability to work, perform daily tasks, eat, or even get a good night’s sleep.
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There is additional insight that I wish you had about this medication-induced condition, which presents with its own unique symptoms following the long-term use of certain drugs. It is crucial to understand that TD is not a symptom of mental illness. Despite this, because TD can be so embarrassing, I withdraw socially, resulting in isolation and anxiety, which are results that impact my mental health. Sometimes people don’t realize I have TD until they notice my TD movements. TD is invisible until it’s not.
When I am symptomatic so often, I am met with others wondering what’s wrong with me. A deeper understanding of this condition would help with being falsely judged and generally misunderstood. The heart of my wishes as someone living with TD, aside from wanting and waiting for medication that successfully treats TD completely, is my desire to find greater social acceptance without anxiety as I experience my day-to-day life with this unpredictable yet chronic condition.
What would make the greatest difference is support and awareness from the general public. This is probably my dream as a patient who gets me through the tough times that can feel like a nightmare. As an individual living with TD, I want the general public to understand it. This would help me feel more comfortable and, hopefully, decrease the countless, yet all too common, instances of being treated with suspicion or met with people’s stares, without the agency to change the situation.
Until then, as a patient with TD, I have some options other than taking another medication that may or may not work to minimize my TD symptoms. I can join a movement disorder support group where I can create community with other TD patients. This helps with internal acceptance during the delay in public understanding. Their perception has a long way to go before it catches up.
Here are some insightful takeaways that I wish you knew about my condition:
1. Don’t stare – it embarrasses me
I wish you wouldn’t stare. My TD movements make me different, I know, but you don’t have to amplify my social discomfort.
2. See me for me – look past the TD
There is more to me than my movements. I shift from a non-visible condition to a very distinct visible one that you may notice before I even realize it. This makes living with TD extra challenging.
3. Ask me first – don’t operate from ignorance
Ask me first before you speak from a place of ignorance. I would prefer to engage in an informed dialogue rather than have my silence, isolation, or involuntary movements foster any incorrect beliefs that, in the absence of correct information, can lead to harmful misinformation.
4. Listen with compassion to develop understanding
When I feel ready to open up to you about living with TD, I need you to listen with compassion. Hearing my words without understanding my feelings behind them about living with this condition makes for a hollow experience of sharing with you for me. It is also a missed opportunity for you if your intentions to understand are sincere.
5. Show acceptance, not create stigmatization
I wish you knew how you can create positive change by changing your perspective. Just one person, like you, who shows acceptance is one less person creating stigmatization. No matter how small it seems, it makes a difference to me and others like me who have TD.
6. Don’t assume I can control my movements
Last, but not least, if I could, I would control my TD movements. But it is erroneous to assume that I can. The movements are involuntary.
These are the unfortunate facts of life for someone like me living with TD. Not even wishing can control my condition. Although TD may identify me, I refuse to let it define me.
