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What I Want People to Know About My Tardive Dyskinesia Diagnosis

Just a few years ago, my life was relatively calm and stable — or at least as much as it could be with bipolar disorder. I was managing my mental health with both medication and talk therapy, but the biggest challenge was finding the right medication to stabilize my mood without exacerbating my other conditions. The cornerstone to my medication regimen was an antipsychotic, which was also found to be effective in stabilizing mood disorders. After trying close to a dozen different options without positive results — and in some cases, detrimental effects — this antipsychotic did wonders for my mood. I really can’t put into words how much my life improved with it. 

However, there was also a downside. This antipsychotic came with certain side effects. I read up on the common ones but not the rarer ones. This ended up being a mistake for me; I developed one of those rare side effects. Had I known about it sooner, it could’ve been treated earlier and may not have become chronic. That condition is called tardive dyskinesia (TD). For those who may not know what this condition is, I have another article going into much more detail about it. Here’s a quick summary: TD is a movement disorder that develops from long-term use of antipsychotic medications. It causes uncontrollable movements, often referred to as “tics,” which commonly show up in the face and neck (however tics in any part of the body are possible). Unlike other side effects, TD typically doesn’t develop in the short-term after starting the medication. It can actually take months, sometimes years, to manifest.

The immediate treatment for TD is discontinuing the medication. TD can either be temporary or chronic, and that depends on the length of time between symptom onset and diagnosis/treatment initiation. If that timeframe is relatively short, most patients see their symptoms slowly fade and end on their own. However, for those like me, who didn’t know the signs and symptoms of TD, my diagnosis took several months after symptom onset. I didn’t think my different blinking pattern was an issue, so I didn’t raise any concerns with my doctor. With such a long time between onset and diagnosis, my condition ultimately became chronic, with symptoms persisting for longer than a year. It’s been two or three years now, and I still have tics every day. 

Considering TD is such a rare condition, I got a lot of questions when I started telling my friends and family about it. After years of explaining my TD to people, I’ve learned a couple of big things that people should know about the condition:

  1. I had to grieve after my TD diagnosis. As I said, the main TD treatment is discontinuing the medication that caused it. For some people, that means losing a medication that they had been on for a long time — ones that were likely effective at treating their condition(s). That antipsychotic medication was the most effective medication I’ve ever been on for my bipolar disorder. If you’ve ever known heartbreak over losing someone or something, it’s a similar feeling to how I felt giving up my antipsychotic. It had improved my life in ways nothing else had, so having to part ways was like losing a friend who had helped me through my darkest times. I had grown to love that medication for the way it helped me; to this day, I still miss having the relief it gave me. Nothing has really been able to do what it did, so I had to grieve losing a massive source of relief for my mental health in the interest of my physical health. 
  2. If I could, I would get rid of my TD entirely. This is a broadly controversial topic in the health world: if you could take a magic pill to get rid of a certain condition, would you? Everyone has different answers that need to be respected, and I think there needs to be more understanding for those different answers. For me, I wish I could get rid of TD. I have enough on my plate with mental and physical illnesses, including an entirely separate movement disorder, so I’d love to get a break from any of them. Having to deal with multiple movement disorders is rare and frustrating beyond words; the prospect of alleviating one of them would be a dream come true. This is just my experience, and I cannot speak on behalf of all people with TD. Many will have different opinions on this, but this is my own point of view. But there is an important point with this too. I had to come to terms with my feelings of wanting to get rid of my TD, but I also had to learn to have grace with myself and the fact that there isn’t a cure for TD. There are treatments, which have given a lot of people relief. But my TD happens to be treatment-resistant. Despite my dream of getting rid of my TD, I needed to come to terms with that reality. And I can confidently say that I have.
  3. TD represents how mental illness isn’t “just something in my head.” When I was diagnosed with my mental illnesses, and when my TD symptoms first started, I was an undergraduate student studying neuroscience. I had learned enough about how much our minds are interwoven with our bodies, but I didn’t realize that that also applied to me. I had never really experienced physical illnesses beyond childhood asthma and the occasional cold or flu. And I never thought treating my mental health could threaten my physical health — even though I knew better. It unfortunately took two movement disorders to learn an important lesson: mental illnesses and treatments don’t just live in my head. They impact my body as well. Now I will say, TD is a rather extreme example of this, but many with mental illnesses know how anxiety can lead to chest pain and tightening, or how depression can lead to muscle aches. And the physical side effects of psychiatric medications only prove that we cannot think about mental health and physical health as separate entities. They are connected forever, and we have to take both into account when we treat one or the other.

I could go on for much longer about my relationship with TD tics, but these three lessons I think represent the biggest things I’ve learned and what I want people to know about TD. My story is not everyone’s story, but there are also parts of it that are not unique to me. My experience may not be yours in one way, but maybe you can relate to another part. All in all, my life with TD is complicated; it certainly isn’t easy. It has changed my life forever, but I would be lying if I said it has changed it only for the worse. While I wish I could get rid of it, the reality is that it’s going to stick around, so I’ve tried to learn something from it and will continue to do so.

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