How Not To Be An A**hole to Someone With Tourette Syndrome

Dealing with difficult people is part and parcel with having significant Tourette Syndrome. While the overwhelming majority of people ignore my tics, or at least pretend to, there are always going to be people who, for one reason or another, feel the need to have some sort of interaction around them. To be completely clear, this does not automatically make someone a jerk. There are good reasons why someone might need to address the subject of my tics with me, but how this is approached has an enormous impact on my perception, and perhaps that of the other people present, with regards to whether or not you are an asshole.

For those of you who aren’t familiar with Tourette Syndrome (TS), or whose knowledge doesn’t extend past corpolalia (the relatively uncommon “swearing tics” that the media is so very fond of), allow me a brief explanation to ensure that we’re all on the same page:

Tourette is a neurological condition that causes repeated involuntary movements and sounds, or “tics.” These can include sniffing, grunting, throat clearing, head jerking, facial grimacing, or just about anything else you can imagine. Both motor and vocal tics must be present (or have been within one year) for a diagnosis to be made, and the symptoms wax and wane without a great deal of discernible rhyme or reason. Over time, new tics can develop and old tics can fade away. I have a host of symptoms, from the largely unnoticeable, such as painful dystonic back and neck tics, to more obvious tics like head jerking, or the barking from whence my person website and blog take their names.

There are virtually no medications designed expressly for treating TS. There are a host of drugs that have anti-tic properties in addition to their original purpose, and for many Touretters medicine can reduce the severity and frequency of their symptoms. Relatively few people achieve full tic suppression through medication, and it is vitally important to strike a quality-of-life balance between the impact of the Tourette, and the impact of medication and side effects on one’s life. A very limited number of people have also had varying levels of success treating Tourette through the use of implanted electrodes in the brain, but the treatment is risky and relatively uncertain in outcome.

Nine out of ten people who choose to address the tics with me in public are jerks about it, saying things like “stop that,” “would you cut that out,” or my personal favorite: “can’t you see I’m on the phone.” Honestly, it’s a rare but awesome day when someone doesn’t assume that my neurological condition exists solely to screw up their day.

I’ve been astounded, especially as I’ve gotten older, by how many people continue to believe by default that a business traveler, fellow shopper, patient, etc, would make noises or twitch/squirm simply to annoy strangers around them. From my perspective, it comes across as rather  narcissistic to imagine a total stranger would want to put out that much effort on the off chance that they might piss you off. Leaving aside the issue of why they’d consider pissing you off to be a goal in the first place.

Although as a rule I believe that I owe it to other people, and particularly my fellow Touretters, to take the high road in interpersonal conflicts around my symptoms; when people have been especially confrontational or verbally abusive, I’ve been known to retort with something along the lines of “do you really think this is my idea of a good time?”

Fortunately there’s a relatively simple tweak that can help prevent escalation and confrontation, not to mention defensiveness on my part: rather than instructing someone who may have Tourette, or another involuntary condition to cease their behavior, instead ask if the behavior in question is within their control.

This sounds like a tiny detail, but in reality that simple change in language can help effect a change of thought pattern. You’re mentally taking the situation out of the realm of something that is only impacting yourlife, and acknowledging that it may be an even bigger burden on the person with whom you’re talking. From my perspective, asking if rather than telling me to instantly takes you from being a potential threat to being a potential ally, which probably won’t have any impact on whether I can control my symptoms, but it sure makes my day a whole lot better.

That’s probably the number one thing you can do to not be an asshole to someone with Tourette, but for those of you looking for a bit more guidance, I’ve put together a handy list of dos and don’ts:

Note: all these examples are drawn from personal experience

Don’t:

  • Yell at me to stop ticcing, particularly from a distance too far to make a conversational explanation plausible. Trust me, shouting “I have a neurological disorder” across a crowded store in response makes me feel bad, and you look bad.
  • Call me names – I’ve heard them all and they weren’t all that clever the first dozen times
  • Tell me how envious you are of me having Tourette because it seems so awesome. Even in my thirties I still get this frequently, and it’s pretty hard to get back out of the “asshole” box in my mind once you’ve said it to me.
  • Call security/try to have me removed from a public place
  • Hit me (yes, really)
  • Inform me that I’m being rude
  • Call my (not present) mother nasty names, my neurological condition has nothing to do with “not being raised right.” 
  • Mimic my tics back at me. I really thought this would end when I became an adult, but sadly no.
  • Speak to my companion(s) as if I wasn’t there. This is a problem for just about anyone with a visible disability.
  • Tell me that I’m bothering people. I promise, I know that, and already feel crappy and self conscious about it.

Do:

  • Approach/address me in a conversational tone of voice
  • Introduce yourself (especially if you’re in a position of authority)
  • Give us the chance to have a polite interaction – I can tolerate a certain amount of ignorance or confrontation if it’s civil from the start, and you’ll feel like less of an ass when you find out that I have a medical condition if you didn’t lead from a place of rudeness or aggression.
  • Acknowledge the tics from the outset, I know that they’re weird. Trying to work the conversation around to them circuitously comes across as duplicitous and smarmy (I’m looking at you TSA/airport security).
  • Unless the symptoms are incredible noticeable or intrusive, just ignore them. Having it pointed out that one’s behavior is outside the norm can make someone feel really self-conscious, even if it’s not done in a mean way.
  • And as I said before, ask me if my symptoms are controllable – “so I couldn’t help but notice that you’re barking, is that something you can control?”

I realize that as not only someone with Tourette, but someone with significantly noticeable symptoms, I’m a tiny minority among the people of the world. It’s not entirely reasonable to expect people to understand something completely out of their experience. But then, that’s why I thought this was an important post to write. One of the first questions I get asked when people find out I have Tourette, is how they should respond when they encounter someone in public who might have TS.

If you’re reading through this post thinking “well… duh,” just remember, everything I mentioned here is drawn from my own first-hand experience. We don’t always react to new situations the way we’d like to imagine we would.

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3 thoughts on “How Not To Be An A**hole to Someone With Tourette Syndrome

  1. Thank you very much for this post. I have come across a few people in public places who I realize now may have had Tourette’s, and what you said here would definitely have been good to know! NOT that I was rude to them (I wasn’t), but it just occurred to me that the person who frequently sat next to me on the bus who kept jerking his arms and poking me with his elbow (in a pattern) probably has Tourette’s, and I wouldn’t have felt as annoyed as I did had I recognized the basics. I knew about the vocal tics, but not the non-vocal ones. I appreciate the additional insight. :-)

  2. I wanted to relay a conversation we once had, as (I hope) an example to those who wish to ask respectful questions about tics in specific, and disabilities in general.

    One of your frequent tics is sniffing, usually accompanied by you grasping your nose. (I relate this not because you aren’t aware, but for others reading this comment.) I noticed it happened quite often when we spoke on the phone, and they usually come in a series, several at a time, rather than singularly.

    I was unsure if you could still understand me (or hear me, even) if I spoke over them, ignoring them as though they did not exist, which is my normal tack when you tic around me. So I asked, “When you sniff like that, do you want me to pause the conversation until you stop, or keep going as though nothing is happening?”

    You replied, “Well, in truth, the tic is very distracting, so if you could pause for a moment, it would be helpful, but you don’t have to if it would impact what you’re trying to say. ” (I’m paraphrasing, as this conversation happened a long time ago, but that was the general gist I got from your reply.)

    And this is what I took away from that exchange: that it’s not rude, per se, to ask about the disability and how it affects someone, as long as you’re couching it as part of a larger conversation about wanting to be a friend/ally. Instead of me disclaiming, “That’s really interrupting me. Can’t you control it?” *or* just ignoring it even though I was unsure if that was the right thing to do, I asked a question in such a way in which I was trying to make life easier for *both* of us.

    As someone who uses a wheelchair, (and especially as someone who is also frequently seen standing or walking), I get a lot of people I don’t know asking me why I use it. I don’t mind answering, but I always wonder how they would feel if I just started asking them personal, medical questions. I’m tempted, sometimes, depending on the person, to counter with, “Well, when was the last time you got an STI test?” I don’t, because I don’t think most people would understand the non-non-sequitur. However, I am much more inclined to answer questions related to my disability when it directly relates to how we interact – “Would it be more comfortable for you if I sat down while we talked?” or “I’d love for you to come to my party, but there are stairs you’d have to climb; does this mean you can’t come?” Then it’s a request for understanding, rather than sating one’s prurient curiosity.

    I think that’s a big point here – regardless of someone’s disability or perceived disability, it’s always best to ask questions/make comments that relate directly to wanting to better understand how to treat us like normal human beings, while taking our challenges into consideration, rather than either asking questions out of a sense of entitlement in knowing some personal information about a stranger, or trying to invent conversation around such interests.

    And it’s always the better move to assume that if someone needs some sort of assistance because of a disability, even if that assistance is mere patience and understanding, that you give it without question *first*, and then ask questions of clarification in order to make future interactions better for everyone involved.

    Thank you for this essay. I think it’s a good read for anyone who knows someone with a disability, but especially one as little understood as TS.

  3. This is an excellent summary and there’s some helpful tips in there for me particularly the language to use when I’m addressing someone about their tics.

    Also regarding one of the don’ts, I am horrified by the idea that someone said unkind things about your mother. She’s awesome! ;)

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