Tourette syndrome (TS) can be very strange to those who do not know or understand it. This week we celebrate the European Tourette Syndrome Awareness Day (June 7th) by providing a few recommendations on how to treat people who suffer from it.
These recommendations have been confirmed by the testimonies of people with Tourette’s, the members of the Asociación Madrileña de Síndrome de Tourette y Trastornos Asociados (Madrid Association of Patients with Tourette Syndrome and Associated Disorders or AMPASTTA, for its acronym in Spanish) (See Acknowledgements) Thank you all so much!
Let’s start from the beginning: what is Tourette syndrome?
Tourette syndrome is the most widely known tic disorder. Tics are movements (motor tics) or sounds (phonic tics), but they are always involuntary, sudden, and not goal-directed like voluntary movements or the voluntary emission of words and sounds.
It is estimated that 90% of people with Tourette syndrome have other symptoms and/or associated disorders (such as attention deficit hyperactivity disorder—ADHD, obsessive-compulsive disorder—OCD, and/or autism spectrum disorder—ASD) and only 10% of people with Tourette’s have tics as their only symptom. In this post, we will focus on tics because they are the main symptom used for diagnosis and because is also the most visible.
12 ways to support your friend with Tourette’s
Tourette syndrome can be a difficult topic to talk about, both for the individuals who have it and for those interacting with them. But as with any other disorder, it is important not to ignore it, and instead, to familiarize oneself with it and treat it naturally.
If you ever come across someone with this disorder, but especially if you have a friend with Tourette’s (or a family member, co-worker, or even just an acquaintance), it’s important that you learn what makes them feel comfortable and what doesn’t.
These are the 12 ways to support your friend with Tourette syndrome:
1. Don’t stare if your friend has a tic
This advice may seem obvious or too basic, but there are tics that can be very noticeable because of their severity (yelling, jumping, making sounds with the mouth or throat, flailing the limbs, etc.). No matter how flashy or exaggerated tics may be, try to act natural and pretend not to notice them. Even if you’re curious, it’s very rude to stare.
2. While having a conversation, try to pretend your friend’s tics aren’t there
Ignoring the tics, pretending they don’t bother you, or simply not reacting to them is the best thing you can do. If your friend notices that other people notice their tics, they will become more stressed out, which will result in an increase in their tics, which in turn will upset them because they can’t control them, which will stress them out further, leading to a vicious cycle that contribute to an increase in tics.
Tics can be very distracting but your friend, as any other person, might be dying to have a normal conversation, so the fact of being constantly interrupted by tics or ending a conversation right when your friend’s tics arise, can be a source of displeasure even if your friend tries to hide it, especially if it happens every day.
It always helps to put yourself in the shoes of others, and in this case, it can be helpful to think about how hard it would be for you if all or most of your conversations were interrupted by your own body.
3. Be patient
If your friend has a tic of any kind that interrupts speech, try to be patient and let him or her express their thoughts. It can be very irksome when people don’t let you finish a sentence, but especially when you have difficulty doing so in the first place.
4. Address their tics according to their personal acceptance of them
We are all different and some people are more comfortable talking about their problems than others. It’s a good idea to listen and observe your friend before asking about their tics to see how comfortable they are and whether they take it naturally or not.
Then you can ask your friend if they are comfortable talking about it, and if they are, ask more questions. This will make them feel at ease with you. Just make sure your questions are intelligent and not something such as “Can’t you just stop?” because, no, they cannot; they simply don’t have complete control over their bodies.
You should also consider when and how much it is appropriate to talk about it. It’s okay to ask questions, but don’t make it the topic of all your conversations. If your friend feels they can trust you and can talk to you openly, they’ll relax and have even fewer tics than usual.
5. Don’t try to fix them
One thing that makes us all feel loved is acceptance; especially if there is something about us that is difficult or perhaps impossible to change, we want to be loved as we are.
It’s no different for your friend with Tourette’s, quite the contrary, and it’s especially important in their case, as they don’t have control over their tics and very often feel bad about them; they tend to have unpleasant everyday experiences, since not everyone knows about Tourette’s syndrome and many people may interpret your friend’s motor or phonic tic as bad conduct or behavior, or even as an attempt to annoy someone intentionally.
The best way you can care for someone with Tourette’s is to love them as they are. If you try to help them, for example, by asking them whether they have tried a certain cure or by recommending a treatment you have read about, they may feel that you are confirming what they already believe about themselves: that there is something unacceptable about them that you wish you could change.
It’s different if it’s your own friend asking for your help, but it’s better not to offer it until it’s requested because it can make them feel like you don’t appreciate them as they are and can feel somewhat hurt and rejected. In the end, all we want is for our friends and close family to love us for who we are.
6. Don’t point out the new tics
Although there are some people who are grateful when their loved ones ask whether a tic is a new or an old one, again, we are all different and there are people who may get upset, especially if they are not too close with the person asking about it.
Chances are that your friend was the first to notice this new tic and is not exactly happy with its arrival. Pointing out a new tic is like saying, “Hey, look, you’re doing a new weird thing!” Instead of thanking you, your friend will probably get irritated. Again, it’s about normalizing the symptoms to make your friend feel comfortable.
7. Look for signs of distress and offer subtle help
If you notice that your friend is having a tic fit, this probably means that they may be more nervous or anxious than usual for some reason.
This may be because they are going through a time or moment of extra stress (e.g., exams, too much work) or because they are in a new place, in public, or in situations where they feel observed and judged by strangers, or simply over-stimulated.
In these kinds of situations, you could help your friend by subtly offering a way out from the distressing situation; to be subtle is important, otherwise your help could be counterproductive and make your friend more overexcited and have more tics. For example:
- If you see that your friend is displaying more tics than usual, try to get them to talk but don’t make it too obvious. Just ask your friend what you might ask any other friend who seems distressed without blatantly calling attention to their Tourette’s: “Hey, you seem anxious. Anything on your mind?”
- Offer an escape (for example, from a restaurant or a party) by saying “I’d like to get some fresh air. Want to come with me?” or by inviting your friend along to run an errand like buying more beverages. Most people with Tourette syndrome find that fresh air or a bit of space help them reset their brain.
- Diverting your friend’s attention (i.e., ask your friend for the time, to reach something for you or to change seats for some reason) is especially useful in situations where a change of scene is not possible (e.g., in the elevator or the subway). Your friend will probably realize why you’re doing it, and even if they don’t tell you, they’ll be thankful for your kind help.
8. Physical contact can be reassuring
Hugs make us feel better and can calm us down by deactivating the sympathetic nervous system, therefore reducing anxiety. You shouldn’t hug your friend if the situation isn’t appropriate, as your friend may think it’s out of place and feel embarrassed. Still, light physical contact lowers stress when wisely given.
By always keeping in mind your friend’s situation and personal preferences, you may be able to show support by gently squeezing their forearm or clapping your friend kindly on the shoulder.
A physical signal of reassurance is great not only because it can help lower stress itself, but also because it’s a way of saying you are there for your friend without grabbing everyone else’s attention. It means that you have got their back and that you know that they are going through a hard time.
9. Don’t joke about it
This is a sensitive issue. Although humor is often used to downplay a complicated matter, determining whether it is appropriate to make jokes about Tourette’s with your friend or not will depend entirely on them.
In general, humor tends to work better with adults than with children, who are more vulnerable and may feel hurt even if it is their own mother making innocent jokes with the best of intention. However, it depends on the individual.
It can also depend on the moment (as happens with us all); there may be days when your friend prefers not to joke about their symptoms at all and other days when they make the jokes themselves (since laughing at ourselves is very healthy from time to time). Of course, if your friend does not feel safe with the person cracking the joke, this is more likely to have a negative effect.
10. Don’t tell your friend that they are being rude or making a scene
Especially if your friend with Tourette’s is a child, this is something that will certainly affect them. Adults often react by becoming angry or upset, even if they don’t show it. But children, as they are more vulnerable, may believe they are being “bad” as a result.
Many (if not most) children with Tourette’s go through very unpleasant experiences at school, not only with other children but also with teachers, who, because they are completely unaware of the disorder, attribute the behavior of children with Tourette’s to bad manners or a troubled personality since they interpret their tics and other symptoms as purposeful behaviors.
Never tell children with Tourette’s that they are being naughty, causing trouble, playing up or making a show, and believe them when they tell you they are not doing it on purpose.
11. Defend your friend
There will be those who bully, taunt or insult your friend, or even call attention to them or those who will try to kick them out from an establishment because they think your friend is too noisy or annoying. Back your friend up and show them that you care. Each of these situations would make us feel terrible; defend your friend and those who can’t help it.
You might not win the battle at that moment, but you will have shown your friend you are there for them when it counts.
12. And remember…
Your friend is fighting daily battles on multiple fronts: there is the battle with the tics (these are also distracting to them and interrupt their activities); there is the battle of acceptance in society (your friend just wishes they could walk down the street without getting odd stares or unpleasant and even cruel comments); there is the battle of acceptance in family and friends (if you have enough support at home, you’ll feel more prepared to face the world); and finally, there is the battle of self-acceptance (again, the support, respect, and affection of family and friends is essential here, without these, your friend will find it difficult to feel that they are worthy of love).
Testimonies by the members of AMPASTTA (summaries)
On their own words….
Juan Jose Gomez (43 years-old):
“My friends respect me and help me a lot. They treat situations in a normal way. Family is always there, worrying and keeping an eye on you…but people with TS may find that they are putting a lot of stress on others with their problem and this can overwhelm them, making the tics worse.
I think you should accept what you have, try to do your best because people, even if they are aware of it, will keep looking at you and you should assume this, we need love and help. When people with TS ask for it, you should talk to them and understand them in situations where they are upset or nervous.
I would like our neurological disorder to be better known by doctors and to appear in the media such as radio, newspapers, television, etc.
In short, I would say that this disorder should get more visibility. With its normalization, society would see that we are normal people and that all we want is to be respected and treated equally.”
Gonzalo Ibañez (8 years-old):
“I don’t like to speak in public because I think people will laugh at me. I wish they’d believe that I don’t these things on purpose.”
Sergio Silveira (10 years-old):
“In the street, it’s a different story. If I make noises, people will stare at me but…I can’t help it. I’m lucky, my classmates take good care of me and they already consider it very normal. At first, my teachers kicked me out of class because I kept making noises, and even though I told them I couldn’t control it, they wouldn’t believe it. But now I don’t have a problem.”
Marcos Varas (9 years-old):
“It calms me down a lot that the people who spend time with me, my friends, my classmates, etc., know what’s wrong with me and don’t tell me anything when, for example, I mix red and green paint or erase the letter A twice. It’s easier for children your age to understand you than adults, children don’t ask so many questions or make a face as if you were a Martian, my friends say: ‘ah ok’, and that’s it.
What I would ask is for people not to laugh at others just because they do something different; our tics don’t hurt anyone but these people do hurt me if they laugh at me because I feel terrible and think I will never be capable of doing anything. The best thing is the people who want to be with me once they know how I am, knowing that I do strange things; those who don’t want this should go and leave me in peace because I try not to bother anyone.”
Raul Varas (13 years-old):
“When I think about what things people could do to make me feel better, they all come down to one: people accepting me for who I am, stop thinking that they’re going to laugh at me or look at me like a freak because I have tics or because certain things make me very nervous.
I feel much better when the people around me know what’s happening to me, I have no problem saying I have Tourette’s syndrome, I’ve told my class, my football team, my friends… well, sometimes it’s obvious that something is happening to me and I like to give it a name, it’s called Tourette’s.
When people know, they stop asking you ‘what are you doing?’ or ‘why do you do that?’ They don’t laugh thinking you’re making a joke. Besides, I’ve found that when they know it, it’s like having a free pass to display my tics and as a consequence, I display less tics than usual so there won’t be this explosion of tics just because of holding them in.”
Have a great European Tourette Syndrome Awareness Day!
By: Lidia García Pérez
References and acknowledgements
The following sources have been consulted for this blog post:
- The collaboration of the members of AMPASTTA through their written testimonies: Juan José Gómez (43 years-old), Gonzalo Ibáñez (8 years-old), Sergio Silveira (10 years-old), and Raúl and Marcos Varas (13- and 9-years-old).
- The article “6 Ways to Support Your Friend with Tourette’s” written by Brittany Fichter and published in her blog about her first-person experience with the syndrome. Retrieved from http://brittanyfichterwrites.com/6-ways-to-support-your-friend-with-tourettes/
- The article “How to understand a person with Tourette’s Syndrome” published in wikiHow. Retrieved from https://www.wikihow.com/Understand-and-Accept-a-Person-with-Tourette%27s-Syndrome
Thanks to Brittany Fichter for her great blog post and special thanks to the young volunteers of AMPASTTA for their courageous testimonies and to their president, Mario Martín Álvarez, for his support and his willingness to help.
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