Catatonia does not belong within the Schizophrenic category at all and for some very good reasons as is laid on in the link below.
Just a quick response to agree with you, and say that
catatonia is no longer within the Schizophrenic category. This is a very good thing.
I understand what you are attempting to do here and recognize it is for the good of the board - for awareness. Based on my personal experience - well it comes across as a challenge and minimization of my daily experience for over 7 years. So let me just clarify that yes, I did suffer from catatonia.
I believe you - and I just want to clarify that "catatonia specifier" does not mean "lesser, or not-as-real, catatonia". I'm sorry that it came across that way. It is now how we can talk about catatonia in a way that is up-to-date and finally acknowledges that it is
not isolated to the schizophrenia spectrum.
(we are actually totally on the same side here, and saying the same things).
The reason it matters: You likely had PTSD before your catatonia, is that right? (I'm going off of what I've read in other threads about your story, please do forgive me if I'm wrong). So, PTSD would be your 'originating' diagnosis. Then, it's about co-morbidity.
A simpler (older) way to say this would be to say you have PTSD with catatonic features - except that the name 'catatonic features' is left-over from when it was limited to the psychosis disorders.
Now that they have expanded their understanding of how catatonia can emerge from many different conditions, when it is
caused by one's originating disorder, it is called a Catatonia specifier.
So, you would be PTSD, catatonia specifier; co-morbid with (whatever you are co-morbid with, could be anxiety, depression, etc...).
As opposed to PTSD, co-morbid with catatonia. Ssaying it this way puts you on the schizophrenia spectrum, and you are clearly aware that you aren't, and don't belong over there. What you want to communicate (I think) is that the catatonia sprung from your PTSD, not from a separate organic brain disorder.
(do I have that right?)
It's nomenclature, that's all.
And it can be really frustrating - I still feel badly for the people with autism who had Aspergers taken away. Once you've had to work to come to terms with a condition, suddenly having the medical community re-name your experience can just feel like being robbed. If someone came along and told me, "oh, you no longer have major depressive disorder, now it's called 'generalized depression' "- my reaction would be to say, "wait, no - I have a
major problem, not a generalized problem, f*ck off." Except the only thing that matters, really, is that I have the right diagnostic label for describing my particular condition.
The new label doesn't actually take away anything of my experience of my illness.
When you need to communicate with new doctors (and I know doctors also are such a trigger for you), it's good to have the labels right - it makes them listen differently. It really does. It shouldn't make a difference but it does. So, If I were your friend going with you to see a brand new doc and was helping you give your history, I'd phrase the whole thing as "I had catatonia for (x) period of time; it would now be diagnosed as a catatonic specifier to my PTSD."
I really appreciate you responding, and yes - it's all under the heading of education,
not at all intended to minimize, truly.
