I have tardive dyskinesia. I’ve not written about it. I can’t find a single reference online about it that doesn’t pathologize it..and DRUG it further.
This is a very brief definition taken from WebMD (and to be clear they do not know what it is)…but the description is fair enough.
Tardive dyskinesia is a side effect of antipsychotic medications. These drugs are used to treat schizophrenia and other mental health disorders. TD causes stiff, jerky movements of your face and body that you can’t control. You might blink your eyes, stick out your tongue, or wave your arms without meaning to do so.
I’m not going to say much now except that in my experience it is, in fact, a heinous and difficult condition to live with. It’s also NOT a disease process. It’s the body attempting to DETOX from the poisoning it’s been subjected to. It works to help clear the body of infection and pharmaceuticals which sometimes go hand in hand. I have surrendered to it and it’s been an incredible ride of astonishing transformative healing as well as a source of insight in and of itself.
I am posting this only because there isn’t any understanding of what it is anywhere from what I’ve seen. And absolutely no one outside of conventional circles speaks of it at all. I’m hoping that we might change that or you might tell me what I’ve missed. We need one another to heal from it as well. It takes on a life of it’s own and is insanely challenging. I don’t know a single soul with it. Most people who develop it are lost to psychiatry in the worst way and generally silenced because of it. I knew people with it when I was a social worker in the system with folks who’d been completely marginalized and we’re no longer part of normal society.
If you have a unique understanding of tardive dyskinesia and have lived with it, I’d like to hear from you. We can keep the conversation private if you wish. When you leave a comment it’s not automatically posted so just request that it stay private if you want that.
Please share this post in mental health forums too if you are members of such places. I’m not.
I may not get back to comments immediately. I may choose to take it to email instead of the comment section as well. I am honoring my personal life now and so working with this site differently.
(Please no advice. Share your personal experience only while understanding we are all unique even if some manifestations in our experience are similar. We never know what someone else might need. This is about mutual data collection and support…)
I took this post down for 24 hours after getting annoying comments by people who thought they know what was up with me and failed to talk about their experience rather than tell me about mine. I don’t tolerate that sort of response. That is how doctors treated us…I won’t allow it on my site. I’ve turned off comments now. I don’t need what I thought I needed when I posted this anymore…and still perhaps others would like to know that this is, indeed, something that happens to a lot of people… I haven’t put any details about my own experience because it’s personal and I only post what feels appropriate at any time. I don’t give details about myself most of the time…it seems that sometimes means people assume all sorts of stuff I haven’t said. I can’t control that. And so, it’s really not appropriate to tell anyone what is up with anyone other than ourselves…please remember that as we learn to better support one another.