How The COVID-19 Pandemic Positively Impacted My Life With Tardive Dyskinesia (TD)

I live with tardive dyskinesia. Having TD has encouraged me to take stock of who I am and what really matters to me. Am I still intelligent, funny and kind? Am I a strong enough person to project what I have to offer despite my dyskinesias? Can I be seen as me? Most of the time, I think I’m seen for who I am. However the reality of TD for me is that I sometimes go hours, or even days, without thinking about it until some occasion arises that brings these unwanted movements to the forefront of my consciousness again. Every time it happens, every time I “catch myself” clawing my leg or engaging in an elaborate mouth, tongue or lip harmony, my breath literally catches in my throat … and it’s usually a losing battle to quell the tears. I think How must this LOOK?! I wonder about this each time, even if no one is there to see it. I feel angry roiling beneath the surface too.

Wearing masks and social distancing due to COVID-19 seemed to initially offer me a reprieve from the worrying about tardive dyskinesia. Staying at home meant fewer situations where I could be “observed” or “caught” tangled in an uncontrollable motion. Wearing a face mask has helped protect me and you from COVID-19; however for me, it has had the added benefit of concealing the oro-facial-lingual (OFL) movement, which more than 80% of those living with TD have, including myself. During the pandemic, I felt freer to walk the bike path each morning or shop in the grocery store without thinking about my symptoms as much. Of course social distancing is obviously difficult, and we’ve all learned that wearing face masks can be uncomfortable and inconvenient. However, I’ve still felt a reprieve by following these guidelines.

What I didn’t feel prepared for was all the video calls; I think most of us didn’t really consider how much things like Zoom would impact us. I, like millions of other people, have come to a cautious familiarity with the online meeting format. I can still “hide” (turn off video) in many situations. In sessions with my therapist, I can choose just to see her. What’s difficult for me is participating in groups where everyone’s video and audio are expected to be on at all times — this situation can feel like my worst nightmare. I can see myself twitch, tap, claw, bite and grimace as I try to communicate with people. Honestly, sometimes I feel so mortified! I often become so focused on trying to stifle the unwanted movements that I get distracted, and it impacts my ability to communicate effectively. These other people on the call had been watching me through the lens of TD the entire time, even before Zoom. I was so focused on conveying my thoughts and opinions back then that I actually became distracted enough to almost forget about my symptoms. Remembering that sometimes feels like the hardest part.

As COVID-19 restrictions continue to lift, I presume we will eventually return to in-person meetings with no masks. However, now I will return with more awareness. I was embarrassed to engage with others before I started watching myself on those video meetings. While that experience feels painful, gaining knowledge and awareness definitely isn’t a bad thing. I will grow stronger as a result. Though I realize post-pandemic life- will probably never feel “normal” compared to pre-pandemic life, I desperately will gain an acceptance that will allow me to return as “me,” living confidently with TD.  I’m not just hoping; I’m making it happen.

I’m spending a fair amount of time in front of mirrors these days, trying to see past the involuntary movements. I can appreciate my hair, jewelry and dry wit. (I am aware one’s humor cannot be observed in a mirror, but I amuse myself while I’m staring). Plus, my wardrobe has blossomed interestingly, and I’m experimenting with scarves. I’m also using my phone to record myself. I have learned that I am an animated and organized speaker, and my voluntary movements seem to override TD when I’m in action. When I’m listening, I plan to practice ways to lovingly camouflage any TD distractions, so that I can work toward feeling more comfortable in these scenarios.

I’ve had a respite (quarantine and masks in public), but I’ve also had a realization: In real life I won’t have to talk and watch myself talk at the same time. But since I’ve seen myself on Zoom, I’ve focused on ways to be more confident and feel more relaxed in person. I also have some ideas to boost my self-confidence and lessen my embarrassment about living with tardive dyskinesia. Things like fun jewelry and nifty water bottles are just more tools for my everyday survival kit. I’m feeling pretty confident! 

I shall emerge from this pandemic stronger and more ready to face the world in person, both me and TD. See you out there!