When Faced With Tardive Dyskinesia, Having an Advocate and Being a Self-Advocate Are CriticalShelly, TD Ambassador

I'm Mexican-American, and many Mexican Americans talk with their hands and use movement expression a lot. When I first began experiencing movements from tardive dyskinesia (TD), I thought they were exaggerated idiosyncrasies as a result of having more energy. The medication I was taking at the time for my mental health condition was the first medication that made me feel right in my own mind, more capable, and not so crazy. It's like I was coming back to myself. So, initially, I thought the TD was me expressing newfound energy. I didn't know that the movements were caused by my medication or something that could become permanent. My doctor had never warned me about TD.

This was about 10 years ago. When I went to the doctor, he could see the movements and identified right away that I had TD but didn't mention it to me. He just said, “We'll just put you on another medication and see what it does.” With the insurance I had at the time, I only saw my doctor every 3 to 6 months. So, here I go with another medication that does the same thing; I'm moving all over the place. When I went back to that doctor, I asked, “Can't you just lower the dose, because I really like how this medicine makes me feel mind-wise?” And he said no, that the symptoms I was experiencing were from something called tardive dyskinesia and, if I keep taking these meds, the symptoms will become permanent. But, by that time, I had been taking that class of medication for 6 to 8 months, and the TD did indeed become permanent.

I currently have hand movements from TD that can get a little out of control, kind of like I'm playing the piano—I call them piano fingers. My tongue moves to where I slur my words, which can be—depending on whether I'm really stressed out or not—so bad that you can't make out what I'm saying. My legs dance up and down. Sometimes I rock back and forth, and my husband says it makes him dizzy. So, when we're in public, he'll put his hands on my shoulders to stop me from rocking. The hand movements make my daughter self-conscious. When we're in public together, she'll grab my hands to keep them from going all over the place. My leg movements happen most often at night when I'm in bed. My husband has a bad back, so the jarring of the bed hurts his back, and sometimes one of us has to sleep on the couch. It makes me feel bad that something I can't really control—and sometimes am not aware of—hurts my husband.

Since I've had TD, I've learned that people often assume that I'm inebriated or mentally deficient. That was another blow to me. I've gotten a lot of disapproval from people because they feel like I did this to myself, like I was drinking too much or doing drugs or doing something that put me in this state where my voice was slurring and couldn't control my arms and hands. For example, one time I was pulled over while driving for switching lanes without using my blinker. I immediately became really stressed out, and my voice became so slurred that I could barely communicate with the police officer. And, of course, he was convinced that I was drunk. I tried to tell him that I had a condition called tardive dyskinesia—but are you aware of how hard it is to say “tardive dyskinesia” when you're having symptoms? Ultimately, the officer was very understanding, and I eventually convinced him that I was not drunk. I even volunteered for a breathalyzer test, which after we talked for a bit he didn't feel was necessary. Although I was not inebriated, the officer still called my husband to come and drive me home because he seemed to believe that my word-slurring somehow impaired my driving ability. I had no problems driving, though. I didn't get a ticket, but it's really hard to make people understand that the TD is just a movement disorder and that it doesn't affect your judgment or certain capabilities.

I did not seek treatment for TD for a long time because one of my psychiatrists had told me that anybody who takes antipsychotics will eventually get TD and that I would just need to learn to deal with it. So, that's what we did. My family and I came up with ways for me to deal with it. When I'm in public, I sit on my hands or I put one leg over the other and I grip the bottom of my foot so that nobody notices my hand flexing. I'll cross my legs so my legs won't bounce. A lot of times, I'll catch the side of my mouth between my teeth so my tongue won't start moving erratically. I have permanent scarring on both sides of the inside of my mouth from doing that.

I currently live in a small town, and only one health care provider here accepts my insurance. He (my general practitioner) came on board about 2 years ago. When I became aware that there was treatment for TD, I came to him and said, “I need help with my TD.” He looked at me and said, “You don't have TD. If you did have it, the symptoms would be apparent, and you would have them all the time; I would be able to see them right now, and I can't.” I was stunned and shocked and tried to explain to him that the symptoms don't occur 24/7—that sometimes I wake up and they are more apparent, or sometimes stress brings them on—but he wouldn't let me finish. He laughed at me and said, “Okay. I would know. I'm the doctor.” I ran out of his office crying. I came home from that appointment, and my husband and I went back to the office to try to talk to him, but he'd left for the day. There was a nurse liaison, though, who said I could see her instead of the doctor. I was so upset that my voice became so distorted that you couldn't even understand me. My husband was trying to explain that I was having symptoms of my TD, but the nurse, who had heard of TD but had never seen symptoms of it, decided to question me about whether I had a drinking problem. The irony is, if I would have had those symptoms with the doctor, he wouldn't have questioned my TD, but instead I had them with the nurse who had never seen what TD was and didn't know what she was looking at. It was very traumatic.

I have now become better about advocating for myself, but I also recommend that you take someone with you to advocate for you, especially if you have trouble speaking. I take my husband to every doctor appointment, at least until I become comfortable with the provider. I have to say how important it is that my husband can validate my symptoms because, unfortunately, a lot of the time, doctors don't believe what you say about your own life.

I was not given any information on TD from my doctors or health care workers for quite some time, so I would suggest to anyone who may be experiencing it to please seek information yourself. When you get medication at the pharmacy, read the information about what side effects might occur. You're going to have to advocate for yourself because a lot times doctors are too busy or are not aware that the patient is not going to figure out the side effects on their own. We tend to put a lot of trust in doctors to tell us all the information we need, but that's simply not true. If you're starting to experience early warning signs of TD, definitely ask your doctor if they can treat it. Also, get copies of your medical records and be sure that TD is listed; mine show it under the Allergies category, as an allergic reaction to some medications. I guess doctors don't know where to put it.

The last thing I'd like to mention is that since social media is so big now, you're able to reach out to people more easily than when my symptoms began. Don't isolate yourself. Reach out to other people who have it because the first time I met someone who had the same symptoms, I can't tell you the feelings that it evoked: kinship, a bond, a feeling of “I'm not alone in this world.” It made all the difference.

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