It’s currently Tourette’s awareness month in New Zealand. Madeleine Holden talks to two writers, Lorena and Beth, on living with the misunderstood syndrome.
Tourette’s awareness month is from May 15 to June 15, which is as good a time as any to chip away at the common misconceptions surrounding Tourette Syndrome (or TS). Tourette’s is a neurological disorder characterized by repetitive, involuntary movements and vocalisations called tics. It affects up to 1% of the population, although only a small number of these people will be formally diagnosed. Most will have tics so mild that they may not be aware that they are affected.
Unless you know someone with Tourette’s, it is likely that either you haven’t heard of the syndrome before or know it only as “random swearing disease”, based on stereotypical portrayals in movies like Deuce Bigalow. In order to better understand the realities of living with Tourette’s, I spoke to Lorena Cupcake, 29, a music writer for Store Brand Soda from Chicago, and Beth, a 22 year old writer based in the UK, both of whom have TS.
When were you diagnosed (if you have been formally diagnosed) and what are your tics?
Lorena: I had a lot of behaviors as a kid that I instinctively knew to conceal that in retrospect were obviously tics. For example, I used to lock myself in the bathroom and jump up and down whenever I got anxious. When I was 14, I started hitting myself, throwing things, spitting, screaming, gasping, and tearing at my clothing; it finally got to the point where I asked my mom to take me to a doctor.
A lot of doctors aren’t especially knowledgeable about Tourette’s, so I had a vague diagnosis of an unspecified tic disorder for a long time until I advocated for myself: “I’ve read the DSM-IV, I’ve had motor and verbal tics for over a year, I have Tourette Syndrome.” Suddenly I got my diagnosis.
Beth: I was about 13 when my parents took me to the doctor because of my tics, but nobody uses the word Tourette’s until much later, when I was about 17. Before then, doctors had prescribed me the antipsychotic drug Haloperidal at 15 years old, sent me for MRI scans of my brain and recommended Botox to stop certain tics — all without any kind of explanation of the causes.
I eventually did my own research, realised what it was and went to see my GP without my parents. I insisted that they let me speak to someone else, who agreed right away and confirmed what I already knew: it was Tourette Syndrome.
What was it like growing up with TS? How debilitating did you find it and how much misunderstanding or teasing did you face because of it?
L: Being a teenager was hard. Being visibly mentally ill — a person who screams curse words and drools and also being prone to social anxiety and panic attacks — meant that high school was not made for me. I dropped out of school and spent about a year as an agoraphobic, leaving the house once a month to wander the grocery store compulsively tapping and touching things. Buying items at a store was about the longest interaction I could have without having a tic — any longer than that and I’d have to explain that I had Tourette’s, and hear them say “Like in Deuce Bigalow?”
I was put into residential treatment, and was released into a new school with a robust Special Education for Emotional Disturbances program (great name, I know). As a Special Ed student, I was given certain privileges: I could choose to take a test alone instead of a crowded classroom, or if the other students in a class laughed at my tics I could choose to drop the class and complete independent study credits instead. It’s probably the only reason I graduated high school.
B: It was tough as a kid, because nobody knew what was going on. As a child my tics were often vocal — clearing my throat, sniffing, repeating a word all day. I was a good kid in all other respects so I was never in serious trouble, but I’d be sent out of the classroom to calm down, or put in the library to finish my work. At secondary school it was worse, although I had enough friends that it was never totally isolating. I was careful to try to hide my facial tics from people I interacted with in passing, but, of course, people noticed.
A few times people said things to my face. It was hard not understanding why I was doing these things; why I couldn’t just stop and be normal. I was incredibly stressed for a time, and I didn’t sleep. I fought with my parents who didn’t understand either. People close to me told me to “just stop twitching”, which made it worse.
How about as an adult?
L: As an adult, my tics are more under control, and I have a lot more discretion with who I choose to surround myself with. I’ve had a few people mock me to my face, but the supposedly innocuous, “that’s what she said last night!” replies to my tics are more common and almost as exhausting. I get stared at on the street a lot because I’m yelling random stuff like “fuck” or “I love you, daddy.”
B: My tics are far less pronounced, plus I understand what TS is and can explain it. Even when I was 18 or 19 it still devastated me at times. Now I’m just not embarrassed, I don’t give a fuck. It’s still frustrating when all my tics get very bad at once, usually triggered by stress or my menstrual cycle. At these times it feels like all these muscles in my body are working overtime, without my say so.
A few times TS has got me into trouble, though. I was working in a department store on the tills in menswear, and I was handing a dude his bag. His wife, who had been standing beside him, got all riled up and accused me of flirting with her husband. It’s hard to explain, “nah love, that’s just my facial tics” when your supervisor is lurking behind you.
Did you receive treatment? How do you manage TS and ensure it negatively impacts your day-to-day as little as possible?
L: I tried medication as a teenager; TS medications are considered “orphan drugs,” pharmaceuticals that are not considered worth developing because of the relative rarity of the disorder. My doctors kept flipping backwards through the history pages to find gnarlier and gnarlier antipsychotics. I ended up on a very strong dose of Haloperidol, which is what they inject into your buttocks if you are having an episode in the mental hospital.
I would happily take a medication that worked with a minimum of side effects, but my experience didn’t make that seem very promising. I’m very interested in Deep Brain Stimulation, which has been used in clinical trials for severe TS. I’ve had the best experience with a group of techniques for recognizing the urge to tic and channeling Cognitive Behavioral Intervention for Tics, or CBiT. I wrote about my experience with CBiT in quite some detail here.
B: Haloperidol helped decrease the frequency of my tics when I started taking it at 15, but it completely squeezed the life out of me. I was tired all the time and unable to concentrate. I wasn’t myself and I would never take it again. Treatment options are limited. I do DBT and mindfulness meditations and they contribute to a sense of calm that makes the frustration easier to bear. I’m lucky that my tics have levelled out now and it’s less all-consuming, but it still takes a mental effort not to feel intense shame and embarrassment when I’m out in public. The most helpful thing has been to destigmatise it in my own head; to go about my business as though I have every right to be outside, which I do.
What are your biggest frustrations with how TS is portrayed in the media or how it’s commonly understood?
L: The media loves to use TS as shorthand for ‘has little verbal self control’, which always struck me as unspeakably crass. I feel like the number one fact that awareness campaigns trot out is that only about 10% of people with TS experience coprolalia; the uncontrollable swearing that defines TS in popular parlance. The stereotype of the slur-screaming patient has undoubtedly hurt many people who have TS but do not experience coprolalia. However, as someone who does have that symptom, I wonder what it means that this symptom is so stigmatised that even people with my same disorder don’t care to be associated with it.
If there’s a message I think the media should be sending about TS, it’s that many people with a variety of conditions struggle with involuntary vocalizations. They’re not about you, they’re nothing to be alarmed about and they’re none of your business. It doesn’t really matter if it’s throat clearing or swearing: it shouldn’t affect how you treat someone.
B: I used to be very frustrated that TS was portrayed as the “uncontrolled swearing disease”. I felt misrepresented and hated that the character was usually intended to be comic relief, or that their TS was used as a negative characteristic, or evidence of mental illness. Now I understand that not having coprolalia as a symptom puts me in a safer position than those with the more serious vocal tics, so I try to be more relaxed.
I would like to see characters who have TS represented, but for it not to be the only thing they talk about or experience. I’d like it to just be acknowledged and then for the character to get to do other cool shit like ride a motorbike into the ocean or solve mysteries.
TS is thought to affect three to four times as many boys as girls. Has there been any way that not being male has made having TS harder or made you feel that you lack representation when it’s being discussed?
L: I was blown away when I read this interview with Jess Thom, because it was the first time I ever read a profile of someone with TS that wasn’t basically “twitchy makes good.” The common media narrative is of a little boy who gets teased and bullied for his TS, who then becomes a successful athlete or singer or actor. That’s all well and good, but I also want people to know that you don’t have to be a successful athlete, singer or actor for it to be okay that you have TS.
You can be weird, you can be a punk, you can be loud and confident without worrying that you’re supposed to compensate for the abrasiveness of your tics with humility and sweetness. I didn’t really have any TS role models growing up, or even people I could relate to. I hope this interview helps change that for at least one person.
B: I’m lucky that I’ve managed to connect with so many other girls with TS over Twitter and social media, but it’s definitely something we’ve talked about. There’s a difference in reaction. For me as a small white girl, people’s main reaction is to be patronising about it. As far as reactions go, that’s fairly harmless. I know men with TS find they’re in more danger of getting into fights or being profiled as mentally unstable, but I definitely think a diagnosis was harder to get because I was a girl.
What, if anything, would you want a parent of a child receiving a diagnosis to understand about TS; or a teacher, friend or random person on the street?
L: Suppressing TS is tiring. Having tics can be physically exhausting. It’s not just blurting out words; it’s tenseness, neck twisting and never being able to relax in front of people you don’t want to tic in front of. I hope everyone with TS has access to tools to manage their condition, but I feel like I’d be happier in a perfect world where it just wasn’t a huge deal if I had tics. Make sure you’re not setting unrealistic goals for your child’s treatment and prioritising the comfort of others over their mental and physical health.
If I’m having a tic in front of new people and mutual friends are there, I appreciate when they say “Oh, Cupcake has Tourette’s” like it’s no big deal. Not everyone will want friends to disclose for them, but I appreciate it. I also really appreciate when I say “I have Tourette Syndrome,” and a mutual friend nods along or says, “yes, they do.” For a lot of people hearing “I have Tourette Syndrome” for the first time, their instinct is to assume that you might be joking, so they might challenge you on it or try to make a joke back. If a third party verifies that I am definitely not joking, it tends to go over better.
B: TS can be painful and frustrating. I have repetitive strain injury in some of my fingers from tic repetitions that can last for weeks and weeks. But it’s also so painful to feel judged, and for us to try to suppress our tics. Even if you can suppress them to a point, it feels like holding your breath. It becomes obsessive. I’d like people to mostly chill out about it. To not stare at someone with TS, to smile as you pass rather than hurry your children along. Also I hate hearing people throw the term around. “It’s like you have Tourette’s Rupert!” No it’s not, Rupert.
I’d like people to understand it better, and be more gentle with their judgments. I can deal with being thought of as weird, but people with more serious symptoms are losing out on jobs, flats and opportunities. Parents: don’t tell your kids to just stop twitching, or to stop that particular tic. That’s not how it works and the internalised shame and self-hatred takes years to undo. Don’t make a young person with TS feel broken: listen to them, laugh with them and don’t react to their tics as though they cause you any discomfort. Chill out, basically.
For more information about Tourette Syndrome, visit http://www.tourettes.org.nz.