Some days, symptoms feel harder to ignore than others. Bethany Chalmers shares what it’s like to live with tardive dyskinesia when movements feel more noticeable, and how she creates space for calm in everyday life.

Lately, my tardive dyskinesia symptoms appear to have become much more noticeable - to me, at least.

When small things add up

The twitching of my legs and movements in my arms seem to be bigger and more frequent than before. My feet "dance" in my shoes a lot nowadays, and all my socks have holes in the toes. I've had to replace them with cheaper socks because my colorful sock habit was getting too expensive. However, it is only a matter of time before these new socks wear out too. It's very frustrating!

When I'm out at a restaurant with friends or family, my feet twitching under the table often turns into me accidentally kicking someone.

When I apologize, they always say it's okay, but it makes me feel embarrassed. 

Noticing more changes in my body 

I've recently noticed that my arms squeeze into my torso at the elbows, especially when I am deep in thought and not paying attention to my body movements. And, on top of that, my legs shake - in fact, they're shaking right now as I type this. Sometimes only one leg shakes, and sometimes they both shake at the same time. No one has commented on this, but I notice. 

…The more anxious or overwhelmed I feel, the more aware I become of my symptoms.

I also think that my facial movements may have become more pronounced. It's hard to tell, as I don't spend all day staring into a mirror, and people tend to be too polite to comment. So, most of the time, I'm not always aware of it.

That said, I have caught my mouth twitching during Zoom calls, and, at times, I worry that my facial movements are more conspicuous than I want to admit. I try not to dwell on it too much. 

Wondering why things feel so different

I have two theories as to why my tardive dyskinesia symptoms may be becoming more noticeable.

For the first one, I wonder whether my tardive dyskinesia symptoms will continue to change over time and as I continue my treatment. This can feel difficult to accept sometimes, but I have no intention of stopping or cutting back on my medications. They have worked well for me for nearly 17 years, and I don't want to change that. 

I don't know whether changing my mental health treatment would make a difference to my tardive dyskinesia at this point. At times, it can feel as though the effects are lasting, but I don't have a clear understanding of why. Sometimes, I find myself wondering whether things might have been different if my treatment had changed earlier. But I didn't have that knowledge at the time, so dwelling on "what ifs" isn't very helpful. 

I don't pretend to understand the mechanisms behind tardive dyskinesia, so any questions about treatment are something I would always discuss with my doctor. 

Making space for feeling more grounded 

Another possibility I've been thinking about is how I experience my symptoms during more stressful or busy periods. I find that the more anxious or overwhelmed I feel, the more aware I become of my symptoms.

That idea actually makes me feel a bit more hopeful. While I can't always avoid stressful situations, I can make mindful choices that help me handle daily stress and anxiety with greater calm. 

So, I've been trying to make more space for things that help me feel grounded. That might mean taking fewer extra hours at work when I can or using my days off to rest properly. I also spend time on crafts like crocheting, adult coloring books, diamond art, or writing. An afternoon of crafts paired with my favorite calming playlist on Spotify can help me get into a good place emotionally when I want a bit of a reset. 

I worry that my facial movements are more conspicuous than I want to admit. I try not to dwell on it too much.”

I've found that gentle movement fits into that routine as well. Sometimes, it's just a short walk around the block, or walking around town for errands, such as the mailbox, the library, the pharmacy, or the bank. And on some evenings, my favorite way to move is dancing up a storm in the kitchen while I prepare dinner. 

Finding what works for me

I hope to find better ways to navigate my daily experiences with tardive dyskinesia and, in the process, build something reliable and supportive for me.

The information presented is solely for educational purposes, not as specific advice for the evaluation, management, or treatment of any condition.

The individual(s) who have written and created the content in and whose images appear in this article have been paid by Teva Pharmaceuticals for their contributions. This content represents the opinions of the contributor and does not necessarily reflect those of Teva Pharmaceuticals. Similarly, Teva Pharmaceuticals does not review, control, influence or endorse any content related to the contributor's websites or social media networks. This content is intended for informational and educational purposes and should not be considered medical advice or recommendations. Consult a qualified medical professional for diagnosis and before beginning or changing any treatment regimen​. 

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