Happy tourettes awareness month! Here are some things in no particular order I wish people understood about living with tourettes!
- We have to live with a constant fear of others thinking that we are on drugs or otherwise dangerous to be around. A lot of people tell us to not suppress because "you shouldn't be embarrassed!" But it's not about that. Having tourettes can genuinely put you in danger, and for many of us already has many times. It's not about being embarrassed, it's about being fearful.
- Suppression hurts. It's exhausting and it's hard.
- Coprolalia is more than just swearing. It can also look like saying "I have a bomb" when you're in an airport. Or "I'm a nazi." Or any number of things that are socially unacceptable to say. Coprolalia is about your brain attaching to words or phrases that you simply shouldn't say.
- Copropraxia is its lesser known twin, which is the same thing but with movements instead of words.
- Tourettes isn't just tics. Many of us also have rage issues and rage attacks, impulsivity issues, comorbidities like ADHD, OCD, and autism, chronic pain from constant movement leading to sore muscles, learning disability, social impairment, and much more.
- A clinical feature of tourette's is waxing and waning. Put simply, that means that sometimes we have a lot less or even no tics, and others we have a ton of tics. Waxing and waning periods can last hours, days, weeks, months or even years.
- Up to 50% of people with tourettes go undiagnosed in childhood
- You can keep talking while we are ticcing unless it's obvious that it's affecting our ability to hear (for example if I'm screaming.) we can hear you while we are ticking. Tics don't take up our entire brain space, in fact a lot of the time we aren't even thinking about the fact that we are having a tic unless you point it out
- In that vein, don't respond to, comment on, or overly pay attention to people's tics. Doing so will just make us have more. The best practice is to simply ignore them and treat us like any other person.
- A lot of us can drive.
- No, I don't think I tic my sleep. Some people do. But generally, how would we know?
- No, I don't tic during sex. And you're a weirdo for asking.
- Concentrating on something generally makes tics lesson or completely go away. So when you see someone with moderate to severe tourette's have really good eyeliner, or be able to draw or sing or dance, it's not an indicator that they're faking. It's a facet of the disorder that doing things we like lessons tics.
- Studies have found that people assigned female at birth or who otherwise have estrogen dominant bodies have less tics in childhood that gradually increase with age. Many of us are told in childhood that the ticks will go away, and then are taken by surprise when they get worse in adulthood. This isn't widely known, because most studies on tourette's until recently are done on people assigned male at birth
- Also on that note, afab people with tourette's are more likely to go undiagnosed than their amab counterparts.
- Tics don't inherently hurt. What does actually hurt though, or is at least uncomfortable, is the premonitory urge we get before a tic. This can feel like a buildup of energy, sort of like a cough or a sneeze, and gets worse the longer or more that we suppress a tic.
- Tics are both involuntary and controllable. This may sound like a contradiction, but breathing is both involuntary and controllable. You can hold your breath for as long as you can, but it will eventually force you to take a breath. Tics are the same
Fellow tourettics, please feel free to add more in the reblogs or replies :) happy awareness month!
