A lot of people have heard of Tourette’s, yet few people know the reality of Tourette’s and being a touretter
So 10 things I’d like you to know about the reality of being a Touretter (identity first language for someone who has tourette’s that I use. Not everyone wishes to use this term or IFL. Respect everyone’s individual language choices)
Some of us use mobility aids
Yes tourette’s is the reason I use a wheelchair, something that is disbelieved and challenged by many, including health care professionals.
Other touretters may use a wheelchair, full or part time, or use some other form of mobility aid such as a stick or rollator.
Whilst yes there are touretters who use a mobility aid due to another disability, and tourette’s isn’t the reason for them, for some of us tourette’s is the reason we use a mobility aid.
For me walking is often impossible due to not being able to stand due to tics, and the times I can stand my leg tics mean that walking even two steps is very dangerous, causes injury, is very painful, and not a good way to get around.
So yes many of us use a mobility aid due to tourette’s.
Tourette’s makes you stick out
Tourette’s can make you feel extremely exposed, I feel this way in so many situations, but one situation stands out for me.
Being at some sort of event, talk, presentation etc where I inform them of my tourette’s, therefore preventing the need to supress my tics. Yet the anxiety of being in a room, especially when with say twenty other people all sat by each other I feel extremely vulnerable, and exposed.
When you have been in a situation where everyone goes silent, then every noise that you make is heightened.
Ever been in that situation, and you can suddenly hear your breathing, and you are paranoid that it is too loud and disturbing others?
Well in that situation I am making some sort of vocal tic every few seconds, whether its coughing, sniffing, or ticcing gibberish words and sentences really loudly. It may cycle between levels of frequency, with several vocal tics a second when bad, to breaks of maybe upto 10 seconds between vocal tics if I am lucky.
Even if an event is ran by disabled people, is openly an event that promotes itself as a relaxed event, meaning that those who need to make noises or move about can. Even then it is terrifying, and my anxiety becomes very intense.
I stick out, and am exposed, and I am constantly worried about what other people are thinking, and if someone is suddenly going to complain about me, or voice their disproval.
Being unwanted in public
The fear of being kicked out of some where, of people objecting to your presence, and voicing their annoyances about you are not just a fear, it is also a reality.
I have been told I shouldn’t be allowed outside as I will see kids and they will learn offensive words.
Had people sit, and discuss me and then tell me off. Them telling me off, only resulting in increased anxiety, and then an increase of tics.
People tell me to stop ticcing, people tell me that my tics make me look like a weirdo, and I shouldn’t be outside scaring people. Children are told ‘don’t engage with that weird man’
We are made to feel unwanted in public, we are kicked out of places, made to feel like we have to leave, and made to feel like we should stay at home.
We get bullied and abused
Another way we are made to feel unwanted in public is through bullying, and abuse.
At school when my tics (unknown as tics to me at the time) became yet another reason for people to bully me I did everything I could to stop them, I didn’t know I was suppressing them and only caused myself pain and an outburst later. I remember thinking that I couldn’t let the bullies have another reason for bullying me, so I did my best to stop that reason.
In public I can get people laughing at me, whispering, making nasty comments, filming me, pointing and laughing, calling me names, threatening me, and at times shoving me, and one occasion spitting at me.
This is my reality everytime I leave my front door.
Tourette’s causes injuries
I have had various injuries over the years due to my tics, from minor scrapes, to cuts and bruises, to broken bones, and head injuries resulting in me being rushed through A&E for a CT scan.
Whether these injuries come from a tic that hits myself, hits another object, a tic storm, falling over, or an injury due to the repetitive nature of tics.
The simple fact is though tourette’s causes injuries, and leaves physical marks.
I wrote a whole post on pain, and tourette’s, which you can find here.
The simple fact is though that tourettes causes pain, there are parts of my body that are always in pain to some degree, other parts where the pain comes and goes.
Obviously injury can result in localised pain, but I am in general daily pain of some degree due to being a touretter.
Tourette’s doesn’t come alone
So rarely does tourette’s come alone. Many people also have OCD and/or AD(H)D, or may have obsessive behaviours if they don’t have OCD.
Many touretters have anxiety or depression, whether they are diagnosed conditions, or come along in bouts when in difficult situations, anxiety can increase at times we know will be stressful.
Many touretters may also be disabled in other ways, whether physically or mentally. Tourette’s could make these conditions more challenging, or these other conditions may make tourette’s more challenging, or both of course.
The tics you see, and hear are not the whole story
As the above point shows you most of the time a person doesn’t only deal with tourette’s. However, even in terms of just tics what you can see and hear is not everything.
There are mental tics which I blogged about here, but there are also motor tics you can’t see. I have so many tics which clench various muscles, these can be incredibly painful, and often unseen.
Others call them tic attacks, or tic fits, I call them tic storms. (I blogged specifically about them here). Different people use these terms to mean slightly different things.
For me a tic storm is an outurst of motor tics so severely that they resemble a seizure. This is an episode that can last for several hours, and leaves me ill for several days with exhaustion, they can cause added pain, and cause injury.
Any emotion can increase tics, not just the negative ones
So often people will tell me that tics increase when someone is anxious, whilst that might be true for many, it is equally as true that tics can increase when someone is happy, or excited. For some anxiety may cause no increase.
It is emotions that can change tic frequency rather than negative emotions specifically.
So when you think of tourette’s as ‘that swearing disorder’ or you think of only the vocal, and motor tics that you can see or hear then maybe remember these 10 realities of tourette’s. You will notice that not one of the points mentioned swearing, and that, mostly they were not directly about tics either.
So stop and think.
Don’t use tourette’s as an insult about a politician or someone else who says something you don’t agree with.
Don’t equate tourette’s only with swearing.
There is a reality to tourette’s that is very different to what you have been exposed to.