Don’t let tardive dyskinesia knock you down! Empowering advice from someone who’s been there.
I’ve had many ups and downs with my bipolar disorder and finding the right treatment for it. One of those is a condition you may have never heard of called tardive dyskinesia (TD). TD is an example of the obstacles beyond mental health that people like myself may encounter along the way. TD is a condition caused by the ongoing use of antipsychotics, which I take for my bipolar disorder. Symptoms of TD include involuntary, abnormal and repetitive movements of different parts of the body. You can imagine how this impacts daily life, even simple things – the uncontrollable tongue movements made it difficult for people to understand me.
Even though many people have TD, it’s still very misunderstood. That is why I am sharing my story – how I cope with the symptoms, people’s reactions and feelings of judgment and guilt. I am on a mission to raise awareness, fight stigma and make sure patients like me know they aren’t alone.
Just as Things Were Looking Up…
After being diagnosed with bipolar disorder, I spent two years with my doctors trying to find a medication that worked. Just as things seemed to be looking up I started to suffer from uncontrollable movements. I couldn’t keep my legs still and started to experience tongue movements, which impacted how I spoke and made me slur my words. I didn’t know at the time, but these were my first symptoms of TD.
A lot of times I don’t know I’m exhibiting symptoms. For example, my church did a Christmas video last year, and I was singing a song in the front row. They sent a copy to everybody in church, and when I watched it I couldn’t believe my eyes! My husband, Matt, says it looked like I was doing the chicken dance in my chair! My hands moved like a locomotive. It was pretty embarrassing.
A Physical Manifestation of my Inner Turmoil
Reactions to my symptoms from others vary. Especially by people who don’t know anything about my condition, and don’t bother to ask. There were many times I felt like my inner turmoil was on display – that everyone could see “crazy” on me and knew I had a mental illness because my TD symptoms were so visible.
One memory stands out, I was at a parent teacher conference and my hands were swinging all over. I could feel the teachers staring at me. I tried to explain what was going on, but they didn’t believe me. I’m not sure what they thought, but their judgement was clear and it was very hurtful. Situations like these are really hard to deal with. You are working so hard to deal with your mental health issues and strangers who don’t understand are judging you for things beyond your control.
How to Cope with TD
TD is a condition that kicks people who are already feeling down. Just when you find a medication for your bipolar that makes you feel well enough to get back into life, TD symptoms can knock you back down. But, over the years I’ve learned a few ways to cope with TD and make myself feel empowered against this condition.
Learn to Laugh: After the initial embarrassment of my church’s Christmas video, I started to laugh at looking like I was doing the chicken dance. It actually helped. A good sense of humor is one of my primary coping skills. Humor helps combat fear and put things in perspective: You are you, and other people’s perception of you is their own business!
Be Your Own Advocate: Early on in my TD diagnosis process, I encountered a doctor told me I don’t have TD because I didn’t have symptoms all the time. He added “why would you want that? Why would you want that stigma?” I left the office crying. My advice for patients that are experiencing symptoms of TD is to not let answers like the one I received stop you from getting answers. Advocate for yourself or bring along a caregiver that can advocate for you, ask questions and encourage dialogue about your symptoms with your doctor.
Educate Others: I’ve found people who jump to judgment about my TD symptoms aren’t worth the effort of an explanation. But, if I run into people who need to know about it, like a social worker, a nurse practitioner or police officer, then I try to educate versus scold. I’ve had success with that approach. Telling people about my symptoms and that they are worse when I’m nervous and explaining the situation helps break the ice and makes me much more comfortable. I also try to direct them to helpful resources like TalkAboutTD.com so they can read and learn more.
Shelly Barber is from Pflugerville, Texas and developed tardive dyskinesia after taking antipsychotic medications to treat her depression, bipolar disorder and severe anxiety. She has suffered from low self-confidence and embarrassment, but is eager to share her story to help people better understand tardive dyskinesia.
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