What It’s Like to Be Single With Tourette Syndrome

What It’s Like to Be Single With Tourette Syndrome

In 1825 a French noblewoman disturbed her high-society community when she began to uncontrollably yell obscenities during social engagements. A few years later, a French neurologist observed similar behavior in a handful of young men. They’d shriek, grunt, or swear with abandon. He labeled the syndrome maladie des tics, later renamed Gilles de la Tourette illness. It’s what we now call Tourette syndrome, a condition characterized by repetitive, involuntary movements and vocalizations known as tics. Initially doctors believed it was a psychological condition, but when patients responded to medication it became clear that the central nervous system was involved.

Because most early Tourette syndrome sufferers were men, it was initially considered hysteria when present in women — the 19th-century feminine mental illness du jour. To this day, men are affected three to four times more often than their female counterparts. About 200,000 Americans have severe Tourette’s, but milder symptoms appear in one in 100 people. Symptoms usually start in the early teens and improve with age, and despite stereotypes of out-of-control maniacs who can’t stop slapping their faces or yelling obscenities, people with TS experience a variety of tics that can come and go and are often deeply situational, ranging from throat-clearing, grunting, jumping, stroking objects, hissing, hooting, and blinking. In fact, the Tourette’s poster child — the swearing tic known as coprolalia — only presents itself in about 10 percent of those with the syndrome. Tourette’s is often accompanied by other neurobehavioral problems like OCD or ADHD.

Tics are often accentuated during moments of stress (which is why attempts to suppress the demanding urges make it even worse). A Canadian study found that 40 percent of people with TS find it difficult to go on dates and make friends — often the result of emotional scars from childhood bullying, concern about being in unfamiliar public spaces, or fears they’ll blurt out inappropriate words or sounds.

A 23-year-old woman from Kansas City recently spoke with Science of Us about life as a single girl with Tourette syndrome.

When did your Tourette’s start?
I’ve had tics since I was about 8 or 9. That’s when they commonly kick in. As I got older they just got worse. But I didn’t know what it was. Back then Tourette’s wasn’t really discussed.

What sort of tics did you have at first?
I’ve had the same neck tic for about 15 years. I have to keep yanking it around. In school I was worried people would think I was cheating on tests. That was a nightmare because I wanted to do everything right. I was such a Goody Two-Shoes. I’d also open and close my mouth. Occasionally my mother would say, “Stop! You’ll develop TMJ,” but I couldn’t control it. I didn’t have any vocal tics until I was diagnosed four years later.

What were the years like before you were diagnosed?
Middle school sucked. There was some bullying. In sixth grade my best friend moved to Canada. That was rough. We used to play Neopets together, and she was ridiculously smart; we were two nerds who didn’t really fit in. I really closed up when she left. I didn’t want to talk to anybody. I had a lot of anxiety about people. My school was very religious, which caused problems because my family wasn’t that hard-core. We were Catholic, but not the “go out and protest abortion on the weekend” kind. In 2004 our school had mock elections. There were hundreds of votes for our “Lord and savior” Bush and then my single vote for John Kerry. I was made to explain, and I got called “baby killer” and shit like that.

Were you teased about your tics, too?
I don’t know if you remember the Tourette’s guy? He was popular back then, and a classmate said, “That’s what you have, right?” And I was like, “Why would you say that? I’m not like that freak.” A kid in my class noticed before I did. I’ll never forget that. Maybe everybody did? Tourette’s is weird because I can’t describe the feeling I get when I have tics. And you feel crazy — so crazy that you don’t want to go to the doctor because you just can’t explain it.

But can you pinpoint exactly when it started?
I remember moments. One was in fifth grade — we were taking a test and I had a meltdown because I was obsessively thinking about this one line from a book. I was ticking hard, constantly turning my neck and panicking. That was a defining moment. You know how you get a song stuck in your head and it drives you mad? That can happen to me for two years. I didn’t know this then, but ADHD and OCD commonly accompany Tourette’s, and lucky me has the works.

How does your OCD manifest?
If something looks like it feels different I have to touch it. If I touch somebody on the shoulder I have to touch the same spot again and then alternate hands until the feeling goes. That really sucks when you are trying to date someone and they put their arm around you. Holding hands is hard — I want to keep touching the person’s fingers in certain ways. I have to touch until this feeling in my fingers fades. I also have to count all the numbers around a particular figure I’m thinking of. I repeat words or sentences.

My dad definitely has some kind of OCD. His “thing” was unplugging everything before he left the house or went to bed. We’ve never left a coffee pot or toaster plugged in overnight at my parents’ house, and to this day it still freaks me out to leave kitchen appliances plugged in.

When I was little he told me it was so important to turn off all the lights when you go to bed, because leaving a lightbulb on for more than 24 hours would make it catch on fire. Fifteen years later, I still have to turn off every single fucking light in the house before I go to bed, all because of that little “tidbit” my dad gave me as a kid.

It has only been in the last year or so that I knew the difference between obsessions, compulsions, and tics. Compulsions are more of a pattern or a routine. Tourette’s is more of an outburst. When people casually diagnose themselves with OCD I want to blow my brains out. My OCD can be harder than the Tourette’s.

Is that because you are more in control of it and you feel like you are creating your own prison?
Exactly. Tourette’s is like carrying a 50-pound weight. It’s heavy. It sucks. But you learn how to cope. OCD is like a family of gnats running around your ankles. They leave, and just when you feel good they come back.

What was your childhood like?
I’m really close to my extended family — they all live within 20 or 30 minutes of each other. I take after my dad’s side. He has tics. He blinks when he gets nervous or stressed out, and I think his mom had tics, too. My parents are still together. They are very cute. Dad does things like buy my mother flowers, and I will be like, “Oh, that’s so gay!” I’m the only homosexual in my family, but they are big on LGBT rights, so my brother tells me it’s very offensive to use gay as an insult. Middle school was hell. I compare it to military training. Quite a few of the teachers were bullies. One teacher sided with the popular kids, and she would crack down on me for being a little snot.

Can you recall a specific incident?
I was a good student, but her curriculum kicked my ass. However, she couldn’t control the class so there was a lot of screaming and running around. My tics made it hard to concentrate during all the chaos. I was “that kid” who told other students to listen to the teacher. One day everybody was goofing off, so I asked if I could work outside. When the vice-principal saw me in the hall he had a strict talk with her. The next day she looked at me and announced, “I’m going to have to start cracking down now — you can thank her for that.” Everybody turned on me. It was miserable. You can’t treat kids like that. All you want to do is fit in. You don’t want to be the one people talk about. And of course the kids picked on me, too.

I wasn’t great at looking after myself. I had trouble remembering to brush my hair or teeth. I just didn’t care what people thought of me. Well, I did care, but subconsciously I thought, Fuck it. People are going to stare anyway. One girl drew a picture of me picking my nose and blowing snot bubbles and passed it around class. When you’re bullied everyone tells you, “Don’t worry — they’ll struggle down the line. You’ll come out on top.” But I have Tourette’s. They all have great fucking lives. I’m slipping further behind in my social life because my Tourette’s is getting worse.

So, when were you diagnosed?
My parents were nervous because my tics were escalating, and I was about to start high school. I remember all the wrong things about that hospital visit where I was told the verdict. The doctor had a thick accent that I couldn’t understand, and I was really irritated because I didn’t know what was going on. He decided to put me on medication. You have to be careful what sort of medication you give kids, and the drugs he gave me were about 30 years old. Sure enough, they didn’t work.

What drug was it?
I have been on so many that I don’t remember. When doctors ask me to list all the medications I’ve been on they may as well ask what I had for dinner every night over the past 20 years. I do remember taking Risperdal at some point. I wanted to sleep all day, and I gained 30 pounds in two months. I don’t doubt I was taking in less than 5,000 calories per day. I was never full. It was horrific. But the diagnosis itself was the best thing that ever happened to me. Finally I knew what was wrong. I knew I wasn’t crazy.

What sort of tics do you have now?
I still do the neck and the jaw thing. My vocal tics have escalated over time. First, I squeaked. That lasted about a month. I could deal with that. But then I started barking like a dog. We used to have group Mass every month. Sometimes I’d hide in the bathroom. I’d hear women search the stalls wondering where the dog was. The barking transitioned into coprolalia — the cursing tic.

What are your choice words?
Mostly racial slurs or anything inappropriate or forbidden. It’s twofold: the sensation I get from the chest movement as well as the forbidden word that I’m saying.

So, when it comes to dating, how do you meet people? And do you disclose your condition first?
I could never, ever approach anyone in public because I look like there’s something severely wrong with me. When I’m with my parents I introduce myself as “the adult disabled daughter.” I flail and I make sounds similar to the ones people with low-functioning autism make. I’ve had two serious girlfriends and I met them both online. I use OKCupid, which is great for queer relationships, and I can also give a good first impression online with jokes, pictures, and stories about me.

My profile declares that I have severe Tourette’s. “Know what you are getting yourself into.” But it’s impossible to list every single tic, so I have to do it as they come up. Things like, “Oh, sorry, I have to squeeze you in a certain way over and over and over again.”

You identify as queer? What was your coming out like?
My parents are super LGBTQ-friendly. My mom’s best friend is gay, so she’s always been familiar with that lifestyle. At first I came out as bisexual, but then I realized I have absolutely no interest in guys. I was very confused about what made a man handsome. My friends would talk about hot boys and I didn’t know what they meant. I tried so hard, but the closest I got were guys from that emo goth Fall Out Boy era. I was attracted to their feminine qualities — long hair and eyeliner. That was exactly how I figured it out, and I have only dated women since.

How do you manage it when you are out in public or around people you don’t know?
I don’t really go out in public. I feel like my social life got an ax to the face. While part of me is like, “Fuck it, I’m a person and I can do what I want,” the truth is, I don’t want to offend anybody. There are some things I just can’t do. I can’t go to a movie and be shrieking the whole time. I take my mother with me when I have to go to the grocery store because people assume she’s a caretaker and leave me alone. I no longer eat out at restaurants, and I’m a foodie, so that’s sad, but the physical tics are a real problem in confined spaces. I take up the space of three people, and I look like a preschooler on cocaine, flailing around and kicking my head back.

I wish I could go to the library, but I’m terrified of getting kicked out. I can’t deal with the shame. I joke that there’s a list of things I want to do if there’s ever a miracle cure for Tourette’s, and that’s near the top. That might be the hardest part about dating. I always feel like I’m being difficult about where we go or what we do.

So, how do you get around to go on dates? Can you drive?
I had to stop. My tics were so bad I was terrified of hitting a child. I couldn’t live with myself if I hurt someone. My driving tics make me look away from the road. I jerk my neck and elbows around, and I would accidentally honk because of my elbow hitting the horn. And I have an obscene gesture tic. I flip people off. It would be funny, if I wasn’t afraid of getting run off the road.

That’s caused issues with my social life. I’m an adult — it’s too weird to tell my date that my mother will be picking me up. I could take the bus, but public transport is terrible in Kansas City. It would be a two-and-a-half-hour trip. It’s almost not worth going out.

Is it worse when you are in environments that are very quiet or heavily controlled?
Absolutely. I have to do or say the most offensive and inappropriate thing.I’m terrified of airports because as soon as I walk through the door my mind tells me to say bomb or gun: Say bomb. Shout it. Shout it. Shout gun. Shout bomb. It’s just torturous.

Do you tend to avoid people who can’t handle your tics? Is tolerance an important criteria when selecting people to date or become friends with?
I have a litmus test: If you refuse to laugh at my Tourette’s jokes I don’t like you. I didn’t like my brother’s girlfriend for the first few months because she was so serious. Anyway, what made me angry is that she wouldn’t laugh at my jokes. She’s this ultra-conservative Christian, introspective girl faced with this monster in a My Little Pony T-shirt and Capris yelling, “What’s up, ya fags!” One time they went upstairs to play video games and I yelled, “Make sure you wrap it before you tap it.” I don’t think I’ve ever seen my brother so mad. I later learned that she just didn’t want to upset me, so she didn’t know how to react. Now I love this girl; she’s a doll baby, and I do feel horrible for harassing her.

How do people react? Is there a pattern?
It’s different every fucking time. I’m great at reading people — maybe that’s because one of my tics makes me twist my neck to look 360 degrees around me — so I can always tell if someone wants to ask about it. Older women tend to follow me in grocery stores. Sometimes they just peek at me around corners. It used to piss me off. But one time I said, “Can I help you?” And she said, “I just want to make sure you are okay.” I felt like a dick. People just want to help. It’s just irritating when I want to quickly run into the store to get some milk. I don’t want to be stared at.

That must be draining.
It is — physically and emotionally. At one point my tics were so bad if I went out I had to take a two-hour nap. I have to move around constantly in public. It’s a free-for-all.

So, are your tics an issue when you have sex?
I’m a virgin by choice. My first and only sexual experiences have been with my hand. The Catholic school really took a toll. I still struggle with their puritanical teachings: Sex hurts, and it’s dirty, unless you are married. The worst I recall was a school-wide “purity” assembly. These two assholes (husband and wife) preached about the importance of staying pure. It focused on women not being sluts, and men picking “good women.” We had to sign membership cards promising we’d stay pure until marriage. It’s so misogynistic and puritanical. The mainstream purity garbage is so pervasive in pop culture. Girls are vilified for exploring their sexuality. To this day one of my biggest fears is penetration. I don’t wear tampons because I’m scared. And I’ve debunked all the myths! I know that nothing will break or pop down there, but there’s a huge mental block I can’t get past.

Do you remember your first OKCupid date?
We met up at an outdoor shopping center to get frozen yogurt, then we went window-shopping. It started raining, and we had to huddle under an awning. I wanted to hold her hand, but we waited. We didn’t kiss, but I dropped her off at her house. She became my first serious girlfriend. We dated for about six months. She was the first girl I ever really loved. I know that sounds cheesy, but I really, really loved her.

How did that relationship end?
She wanted to go further than I did and I just couldn’t get past it. It all goes back to me being uncomfortable with sex and my body.

Do you think your fear of penetration is related to your Tourette’s or OCD, or is it a product of the puritanical sex education you had?
It’s definitely a mental block from what I was taught as a kid. I have been trying to pluck up the courage to get past some of that when I masturbate. I have become a lot more comfortable with my own body. I’m a late bloomer. I’m going through what many girls went through when they were 16 or 17.

What about the tics — were they an issue with your first girlfriend?
She had generalized anxiety disorder, so standing out in a crowd freaked her. That was a big problem because people always stare at me. I’m fucking used to it. One time we were at a restaurant and she shushed me! I know I talk very loudly, but I was also ticking, so that bugged the fucking shit out of me. I can’t stand people infantilizing me. But, to be fair, I am loud. At family gatherings everyone is very quiet and prim and proper, and then I’m like, “Pass the fucking bread, homos!”

When you know you have to be quiet or modify your body language your tics get worse, right? Do you think that gives you a unique insight into the way that, in general, people are rather socially compliant and controlled? You really challenge that social contract …
Yes! People are bound by unwritten rules. If you are in a restaurant don’t shout. Don’t scream fire in a movie theater. Don’t yell bomb at the airport. When you meet your brother’s sweet girlfriend don’t scream cunt. It’s weird for me, especially, because I used to be so aware of being “good.” It really threw me [for] a loop to have my brain tell me to shout gun. Shout rape.Shout the N-word.

Do you have date-specific tics?
I’ll say the b-word and fat ass. I hate it so much, and I’ve said it to people skinnier than me. My brain doesn’t give a shit. My brain does what it wants. If I am around a minority I will shout a racial slur. When I go on a date I instantly know if my tics will irritate someone. And that’s fine, but I know it won’t work out in the long run. If they tell me to be quiet or hold my arms down I am like, Fuck off. That’s a deal-breaker.

You identified as bisexual for a while. What was it like when you dated men? Were your tics better or worse?
Men are much more touchy-feely. I don’t know if this is just my experience but my lesbian relationships usually start out as friendships before they graduate. I always felt like I had to put on this fake, girly persona around guys, but I can text gay girls like, “Hey, let’s get pizza because I’m a fat fuck.” I did go on a date with a guy I met online. We went to see The Conjuring. Every time I’d tic, like look up towards him with my neck, he would think I was making eyes.

Did he think you were trying to kiss him?
He did. And I mean, I kind of liked it. But obviously I wasn’t even close to going all the way on the first date. I feel bad saying this because readers will think he’s an asshole, but he wasn’t attracted to me. I was a lot heavier back then. He avoided texting me for a week or so before he finally explained. I told him it really didn’t bother me — I’m not offended because one guy in the Midwest thinks I’m fat.

And I’ve done the same thing. I dated one woman for about a week and she told me she was in love with me. She strong-armed me into a relationship. She even took me out for Valentine’s Day and bought me flowers. I had to get out.

Were you okay with being up front about it?
I lied through my teeth. I blamed depression and said I didn’t think I was in the right space to date. She said, “We will get through this together, babe.” She just didn’t get what I was saying. This is not one of my better stories.

Don’t worry! We’ve all been there …
She wouldn’t leave me alone. She was such a nice girl — I still feel bad. My family went away for spring break, and I didn’t tell her or text her. Finally she said she was done. I was relieved. She was going through a very bad time, and I am just an asshole. Another thing is that I have a very poor memory. I can even forget the names of people I’ve dated.

Do you think the mental energy expended on the Tourette’s andOCD impacts that?
Definitely. Because of my neck tic I zone out in conversations. I have to turn around and look at everything around me. It’s very distracting.

Tell me about your second girlfriend.
I really loved her. She was my longest relationship; we were together for about four or five months. I still have a lot of feelings for her. I recently figured out that I have a type.

Do tell!
Women who are the opposite of me. They don’t willingly dish out compliments; they might even be a little harsh; they are reserved. They don’t get too excited about everything. I am very off the wall and full of compliments. I go for calm and steady girls. I like introverts.

Is that because you get annoyed when you see your behavior, or similar behavior, reflected in other people?
Sometimes I listen to the things that come out of my mouth and think, If you were someone else I’d slap you. I don’t think I could deal with another me. This is one of my guilty confessions: I have a hard time being around other people with tics. It’s so awful to say. I think it might be projection.

Back to your touching compulsion: Can you control that in sexual situations?
I haven’t been in any sexual situations beyond kissing and fondling. No pants off. But I can’t cuddle or curl up on the sofa because somebody else is touching me, and then I have to touch them in certain ways, and it’s just a mess. I very much struggle with that. I crave that affection. But it doesn’t work for me. That breaks my heart.

So you actively avoid being intimate?
Yes. I know it will just be horrible. That might sound nihilistic, but this is after a lot of failed attempts and heartbreaks. People often accuse me of being pessimistic about my tics. I have to be honest with myself because nobody else is. Saying I’ll be fine in a few years hurts more than it helps. I’m a realist.

Why did your last relationship end?
I was quite depressed and I didn’t want to talk to her. She was also going through a lot and we just couldn’t handle each other. A few days after our breakup I attempted suicide. Everyone thought I was sad about my relationship ending, but I don’t connect the two events.

Maybe your depression caused the breakup rather than the other way around?
You nailed it. I had just started developing the cursing tic and that scared me, and I didn’t know where I was going in life. I was lost. I still lived with my parents and I was 21, and that really sucked it out of me.

When did the depression start?
I’ve struggled with it since middle school. I saw counselors, and nothing worked. I think all teenagers have a certain amount of self-hatred, but my junior year of high school was an all-time low. The barking had just started, and I told my therapist that I needed help. I said I had a plan to kill myself. “I feel like I’m spiraling out of control, and I don’t know what to do.” I was hospitalized for three days.

What was your plan?
Looking back, I can laugh at it. I was going to down a bottle of ibuprofen. Silly little 16-year-old me! I’d even written a note. But after the breakup I downed 12 Zoloft. I got scared and told my parents. I’ll never forget the sound of my mom screaming. Part of what I really struggled with is suicide ideation, which is part of my OCD. The desire to kill myself had been rattling around in my head for so many years that after a while it got to the point that even if I wasn’t depressed at all I’d automatically think, I may as well kill myself. I couldn’t tell anyone. I couldn’t find the words to say, “I keep thinking I want to kill myself, but I know it’s just the thought of it.”

Last June I moved out of home and it’s been the best thing I’ve ever done. I’ve grown five years emotionally. I was totally dependent on my parents, but now it’s just me and my dog. That was a huge step.

That’s awfully brave! I didn’t live on my own until I was in my late 20s …
It saved my life. I think I would have continued to go down that dark path if I’d stayed home. It did take me a long time to learn how to cope on my own and not just call my mom whenever I get emotional. When I hang up they sit with the negative feelings and concern after I get off the line.

So, given your education, how did you learn about sex or masturbation?
Little, innocent 14-year-old me was reading some steamy fan fiction, really getting into it. Suddenly something crazy happened down there. It was the best feeling. I’ve been chasing the dragon ever since.

The orgasm?
Yes. I take very good care of myself. And now I’m a member of a private online group where about 30 of us talk about sexuality. Everyone is very respectful. You can talk about things that you can’t tell anyone else. It makes you feel much less alone.

What do you talk about?
Masturbation and issues with sexuality. There’s a screening process and everybody is a friend of a friend. Talking to other people has definitely made me a lot more comfortable. I just purchased an incredible vibrator. It’s my best friend. One time my mom came over to help clean my apartment. She went to get paper towels from my bedroom. I remembered the giant vibrating wand sitting on my bed. I ran and threw it into my closet and locked the door. There was no way my poor sweet mom was going to see my wall-powered vibrator.

How do you get aroused? Do you watch porn or read erotic stories?
I read erotica. A lot of hard-core BDSM, real hard-core beat-the-shit-out-of-you stuff! Very few of my fetishes line up with my real-life values. I’m a lesbian IRL, but ugh — lesbian porn is made for men.

Does anything calm down your tics?
If I’m having a really hard day I will go and flick one off and feel better!

Is it the orgasm that does the trick?
Yes, I definitely tic while I am masturbating, but after I have an orgasm I’m calm. It’s fantastic. And there’s a video game called Animal Crossing: New Leaf. It’s a peaceful real-time life simulator. I give myself tasks. Today I am going to harvest pears. Another cathartic thing is going to the dog park in winter when nobody else is around. At home I let my dog lay on top of me. She’s a 70-pound black lab–Rottweiler mix. The heavy pressure helps.

Do you wish you had a girlfriend you could vent to?
I can’t really be honest with anyone about how physically bad I can feel. It makes people worry. There’s nothing anyone can do to help. So I don’t tend to talk about it, even with my family.

I recently went to a chiropractor and they discovered my spine is sharply curved in the wrong direction. I don’t tell people about this, but I’m scared I’ll be in a wheelchair by the time I’m 30. My neck and back constantly ache. If I sleep in an awkward position I can’t do anything that day. The last time was excruciating. I stayed in bed until noon. Eventually I called my mom, who raced over with Aleve and McDonald’s. I’m not afraid to admit that I love my mommy. My parents keep me going.

You have a unique insight into behaviors and reactions that nobody else does. I’m curious about what unique things you think you have to offer a partner or why you’d be a great girlfriend.
I really like myself — I’m narcissistic as hell. I think I’d make a good partner because I’m damn good at apologizing and taking criticism. Yeah, that’s what all the ladies really want to hear. “Hey, baby, hit me up. I’ve got awesome interpersonal skills.” But seriously, I’m crazy easygoing. I’m happy to wait around or change plans suddenly; it takes a lot to get me worked up. My biggest flaw is that I’m fucking funny. It’s a flaw because my humor is self-deprecating, and I’m willing to go as far as it takes for a joke. Abortion jokes in front of my dad? Cool. Pedophile priest jokes in front of my Catholic family? Definitely!

Are you worried about the future? Do you see yourself ever being in a relationship?
I have a long-term plan. I’ve always wanted to foster teenagers. But if I meet a partner who doesn’t want to do that we won’t be compatible. If I can’t foster kids I want to have my own and I would want to carry the child. But I don’t know if I would feel comfortable bringing a kid into the world who has my issues. It impacts everybody around you.

What about if your partner were to carry? Or is being pregnant something you really want to experience?
I am very maternal. I want to grow a fetus inside me. I want a parasite feeding off me. So if I can’t, I’ll foster teenagers and get them through high school, propel them into the real world, get a career, and then I will always be there for them. When I have this daydream, I’m always single.

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