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@carpediemblog
"sickness, self-portrait" 10x10 acrylic on canvas
about feeling defined by illness and disability, and that all I'll ever be is a sick person trying to masquerade as something more.
Much of the time I find the way that we’re told to manage tics very much prioritises others rather than the person with tics.
Oftentimes it’s about how to make us more palatable to those who don’t have tics, whether that is being in good humour and allowing them to laugh at us regardless of whether we are comfortable with that, locking ourselves up at home so people don’t have to see something “icky”, putting ourselves in the constant discomfort of suppressing tics for no reason but the fact that other people are ignorant.
Justifying ableism as “well what do you expect going out and yelling swear words?”. When my tics first developed my parents threatened to never let me leave the house, go to school or see friends saying that I have to “think of others”. It is always seen as my responsibility to educate and jump through hoops to be treated with basic decency. People make it very clear that their few seconds of discomfort are priority over my entire life.
Chocolate makes tics worse they say. Fools! You cannot deprive me of my one true love! I will gladly be forced to make vroom vroom car noises forever if it means I get to eat my chocolate.
being neurodivergent and an adult is so ??1?!2?
one moment i'll be working or studying for uni exams and in other i'll reading about sharks and dinosaurs or playing club penguin like my life depends on knowing such facts and collecting different stamps.......
Being disabled is wanting to do your hobbies and do fun things when you're finally not working but having to spend most of your time in bed because you're utterly exhausted, fatigued, ridiculously and constantly tired.
What NOT to say to someone with tics
About a year ago I asked for people with tics/Tourette's to send me things not to say to people with tics. I am so sorry it has taken me so long to post this.
"I'm so sorry" - this could make someone feel bad about being disabled and it feels condescending
"Well you don't look like you have Tourette's" - Tourette's doesn't have a look and not all disabilities are visible
"Just relax" - being relaxed doesn't necessarily make tics go away
"Stop hitting yourself" - don't you think I would if I could.
"Have you tried yoga" - yoga wont magically make someone's tics go away
"But I didn't see you tic" - tics fluctuate so just because you didn't see someone tic doesn't mean they are faking
"You have tics, do you swear?!" - not everyone with tics has coprolalia and its a stereotype that all people with tics swear
"Can you stop that please" - tics are involuntary, someone can't just stop having a tic because you find it annoying
"So you can say whatever you want and not get in trouble" - this is just not true at all, people with Tourette's face a lot of discrimination because they can't control what they say and people think they are faking so they can be rude
"Well if you take medication, why aren't your tics gone?" - medication doesn't make tics go away fully
"Can you tic *insert word/movement here* for me?" - this is just so rude!!
"I wish I had tics" - even if you mean this in a positive way, it is still really disrespectful
There are so many more not on this list as well!
When they tell you they understand but how can they? They’ve never been a 13 year old girl losing control of their body. When they say that it’s hard on them too but they get a break, you never do. When people tell you that you can say anything you want and get away with it but little do they know it’s something you’d never do, you’re told you’re faking it enough already, and when you meet people who are the same as you but you make them worse and that’s on you. When you say something you’d never say by yourself and you feel their pain. Hell is not only a teenage girl but a teenage girl with Tourette’s syndrome.
"they've never been a 13 year old girl losing control of their body"
so real because how can you want me to accept that things in life aren't always in my control when i grew up not having control of my own body.
i have the need to always have control of everything else in my life because i won't ever be able to be in full control of me, physically.
When they tell you they understand but how can they? They’ve never been a 13 year old girl losing control of their body. When they say that it’s hard on them too but they get a break, you never do. When people tell you that you can say anything you want and get away with it but little do they know it’s something you’d never do, you’re told you’re faking it enough already, and when you meet people who are the same as you but you make them worse and that’s on you. When you say something you’d never say by yourself and you feel their pain. Hell is not only a teenage girl but a teenage girl with Tourette’s syndrome.
Me: Mom, can we have two rats?
Mom: We already have two rats at home.
Two rats at home:
this is the single saddest thing I’ve ever seen on cutthroat kitchen
The contestant didn’t speak English as a first language Due to this the judge didn’t judge his dish as biscuits and gravy but as brisket and gravy and the contestant moved onto the next round After this Alton started explaining the dish he was asking them to make more in detail to make sure it didn’t happen again.
THE CORRECT WAY TO REACT TO LANGUAGE MISCOMMUNICATION
tourette syndrome is fun and all until i hit my partner and she gets upset because she thought it wasn't a tic
no but really, last night i accidentally hit my girlfriend and she got upset, because she thought it was me. and of course she has all the right to be upset because someone (especially her own partner) hit her, but i felt so extremely rejected and angry because it wasn't me. sure it was my body, but her reaction, even if totally justified, triggered me so bad i just started crying and shouting.
it's hard living with tourettes on its own, and on my own, but sharing life with someone makes it so much more difficult sometimes. i don't want to hit people i love, I don't want to feel a sudden rage wave just because something little happened (wich, guess what, is a side effect of tourettes too). I'm so grateful for having her in my life and for all her help in tic attacks... but it really gets me sometimes lol i wish i had a normal brain 🫠
Tfw you don’t tic for most of the day and then you randomly whistle or something and it’s like “What was That? Where did that come from?” And then you remember you have the disorder
if it's tourette's syndrome why do i have it? can i give it back to him?