#thinking about this because i don't fit diagnostic criteria for tourette's but i experience tics and i had no idea that's what they were | Explore Tumblr Posts and Blogs

thecoolertails · 8 months

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i wish more people understood that mental illnesses aren't categorically defined in a way that's based in science or biology and that the lines we draw between them are ultimately arbitrary. we assign labels to collections of symptoms and behaviors based on their occurrence with one another, and like anything that tries to sort the infinitely diverse tapestry of human experience into neat and rigid categories it often falls short of capturing the full extent of what it attempts to represent. this isn't to say that these labels are useless (they're absolutely not) but to treat them as definite and concrete facts of reality can be both harmful and counterintuitive to actually helping people who experience these symptoms

not to mention that many mental illnesses and conditions are defined heavily by societal expectations and perceptions of the individual, and that what we consider to be someone who is mentally well or typical vs who is mentally unwell or atypical is biased by hegemonic cultural ideals in ways that can sometimes be regressive, bigoted, or otherwise harmful or close-minded. if neurodivergency and mental illness are viewed from a biologically essentialist lens and the dsm is treated like a an infallible scientific text, it completely removes the ability to notice or contest labels and definitions that are flawed, outdated, or those that should be disregarded altogether.

a well known example of this is how homosexuality was once classified as a mental disorder, but there are stealthier examples that are still officially recognized to this day (such as Oppositional Defiance Disorder, which is disproportionately diagnosed in Black children and other children of color, as opposed to many white children with the same symptoms who are instead diagnosed as autistic)

anyway my point is that while modern psychology and psychiatry can be useful tools for understanding ourselves and each other, it's important to understand that at the end of the day it's still a pseudoscience and is not exempt from human error or social bias. at the end of the day we're all both more alike and more diverse than what those tools can show, and to fully understand ourselves and each other, we can't be entirely bound by them

#thinking about this because i don't fit diagnostic criteria for tourette's but i experience tics and i had no idea that's what they were #until this year because i rarely hear anyone discuss tourette's and tics at all #i also experience obsessions/compulsions but (especially now that im older and ive gotten better at dealing w them) i wouldnt say i have ocd #my tics were also way more prevalent when i was younger but thinking about tics triggers them #so they've actually gotten worse lately as i've learned more about them -_- what a bothersome irony that is #my posts #neurodivergency #neurodiversity #mental illness

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tourettesbabe · 2 years

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hi ! hope youre well :)

so, im 20, and i started developing tics when i was 18 (i fit all the diagnostic criteria for tourette's, except that my tics developed once i was 18 instead of before). i spoke to my psychiatrist about it but he didn't suggest anything along the lines of a diagnosis, just said it might be my medication (we tried changing that and it wasnt it), and then kind of left it at "tics are strange, let's see what happens"

ive been kind of nervous of asking him for an actual diagnosis because it seems like he doesn't know a huge amount about tics, and i don't really feel like i need an official diagnosis (unless it's necessary for accommodations but i havent even started looking into those yet).

basically, i wanted to ask if you think it's okay for me to say i have tourette's? i do genuinely think i have tourette's, i've seen studies talking about how the DSM-5 might be outdated and adult-onset tourette's is a thing, but also it's just easier to say i have tourette's to people than try and explain that i have tics but i don't know exactly what it is and i don't have a diagnosis.

also slightly unrelated, but i haven't told a lot of people because my tics are often not noticeable (especially if i suppress them), and i feel really anxious telling anyone who's known me for a while bc im worried they'll think im faking since they havent seen me tic before.. if you have any advice on that its much appreciated

sorry this was so long- completely understandable if you don't have energy or can't respond! <3

Hey Nonnie! First of all, I'm honored that you'd message me for advice. Thank you for being so sweet as well -- I am doing well, thank you. Now, I'm definitely not an expert, but I can give you my two cents!

While it is true that the official DSM-5 diagnosis for Tourette's requires the person to have been ticcing since before the age of 18, you're also right in saying there is some discourse about whether or not that is completely accurate. Adult-onset tic disorders are a thing, and they can happen for a variety of reasons. IMO, if you fit all the other criteria like you said, it's probably Tourette's. It's also the most well-known tic disorder, so many people will understand what it means (though they may also have some inaccurate ideas about swearing and the like.)

I will say that there are many kinds of tic disorders, and many reasons why tics could be happening. If you're sure you have Tourette's, then I'd say it's fine to say that. But if you're not, I'd just stick with telling people you have a tic disorder. If they ask questions about the diagnosis, just tell them it's currently unspecified. What's most important is that you have tics, not the label.

You know yourself better than anyone else, including your doctor, your family, your friends, etc. So, although an official diagnosis can be useful, don't feel bad about labeling it for yourself. Even if it turns out to be something else, if the label is serving a purpose for you now, or if it helps others to understand you, then I don't see a problem with it.

Getting a diagnosis can be intimidating, but if it's important to you then you need to be confident! Like I said, you know yourself better than anyone else. You need to advocate for yourself and be persistent. If your psychiatrist doesn't know much about tics, ask him if he can find out some more information to help you out, or even present him with your own findings! But, again, if you don't need accommodations and it's not affecting you too much, you may not need an official diagnosis. It's your life, and your tics.

If you do go on the diagnosis route and he isn't giving you the answers/help you need, never be afraid to seek out a second opinion! There are specialists who are trained specifically to diagnose tic disorders, which may be more helpful to you. That's how I got diagnosed when I was young.

As for telling people, in my personal experience I've found it usually goes pretty well. My tics aren't very noticeable either, so when I do tell a friend they usually say they never would have known, but nobody has ever accused me of lying or anything like that. In fact, most of the time they are interested in learning more and want to ask me questions about my tics and experiences, which I am always excited to do.

I don't know your family, so I'll try to cover my bases here... If you have the kind of parent or sibling who might try to say that they know you too well to not have noticed, try and remind them that the tics are subtle and that you may have been suppressing them. Tics can be very easy to miss when someone isn't looking for them, even when they seem obvious to you. Also tell them that it's a very recent thing (and if they question the possibility/legitimacy of that, definitely pull out the receipts lol -- articles, webpages, anything you need to). It could also go just the same as I said with friends. If anyone is particularly uptight about it, don't tolerate it. You are not faking, and anyone who thinks you are needs to get educated.

Also know that you don't NEED to tell people if you don't want to. Even your closest friend or family member is not entitled to your personal medical information if you are not comfortable with sharing it. And, if it's subtle enough that they haven't noticed yet, then they may not notice unless you bring it up. It's up to you who to tell and who not to tell.

Now, I don't know if this has been your mindset in any way, but I definitely would not recommend suppressing tics in order to avoid questions from those close to you. Your comfort is more important than theirs here!!! Ticcing is a natural thing and it is happening for a reason, listen to your body and let it do what it needs to do. I honestly would recommend never suppressing at all, but I understand that it can feel embarrassing or like everyone is looking at you, especially in public. However, in my experience, people don't really notice (even after they know about the tics if they are subtle). I want to remind you though that there is nothing to be ashamed of or embarrassed about in ticcing.

I hope this helped you, if you have any more questions or need clarification on anything feel free to send another anon or DM my way. I've linked some extra resources below that might help. Good luck on your journey, I know you can do it!!! :)

Resources:

CDC's Page on Tourette's

CDC's Page on Diagnosing Tic Disorders

Tourette Association: What Is Tourette

Tourette Association: Diagnosis

NCBI's Article on Adult-onset Tic Disorders

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