What I've Learned From Having a Rare (and 'Annoying') Condition

In Spring 2016, I started “twitching.” After a lot of either “I don’t know” or accusations of abusing drugs and going through detox (all from medical “professionals”), I was diagnosed with tardive dyskinesia (TD). TD is a rare neurological condition. It is irreversible and (in many cases) permanent. It is the result of prolonged use of antipsychotics such as Abilify, Zyprexa and Seroquel.

I tend to run into a problem when having to explain TD to the hospital or a new doctor. When they ask what one of my TD episodes entail, apparently “complete Hell” isn’t the answer they’re looking for. I usually end up resorting to saying that it looks like I am having a seizure, except I am completely coherent. I can talk and (kinda) walk. However, I have zero control over my own body.

Typically, by time my episode ends (longest has been roughly 17 hours straight of twitching), I am in such horrible pain, I don’t even want to think about moving. As soon as I feel it starting, I instantly start stressing. Mainly because I have no idea how long it is going to last. I just know it is going to be painful, and I am going to be embarrassed. I can’t stop the twitching not nor can I even begin to control it.

Unfortunately, because TD is rare, a lot of doctors seem lost on how to handle it. They don’t know if they should send you to psych or to neurology. They don’t know if they should give you medication like Cogentin or take the “wait and see” approach. Then, when you tell them what you have found while doing your own research (including treatment that is used for your condition)… you’re treated like you’re making it up.

One thing I have learned from having a rare (and annoying) condition is you are your own advocate. Occasionally, you have to make waves and go over people’s heads to get something done. I usually try and bring someone with me to my appointments with new doctors (or when discussing different treatment). This way, they can ask questions I may have forgotten about, plus they have seen what I go through. Also, do plenty of research and take tons of notes. I have a whole notebook just for information about my condition.

This is what I’ve learned, but I wouldn’t wish this is anyone.

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Thinkstock photo via Chad Baker/Jason Reed/Ryan McVay