How Not To Meet Someone with Tourette’s

two person shaking hands near white painted wall

  • Ask they why they’re not swearing (only a minority do)
  • Ask why they haven’t ticced yet (people with Tourette’s don’t tic every second of every day)
  • Say they don’t look like someone with Tourette’s (what does a person with Tourette’s look like?)
  • Ask if their condition is quite mild (Tourette’s waxes and wanes, can be quite severe for several months and then quite mild for the next few)
  • Copy their tics (this won’t make them less embarrassed, it will just make them self-conscious)
  • React to all their tics (this is just excessive)
  • Back away from them (if you’re embarrassed by the tics, well, just don’t be embarrassed by the tics)
  • Tell them to “say the bad word in their head” instead of saying it out loud (this is not how Tourette’s works)
  • Laugh when they haven’t ticced anything funny (Tourette’s is a medical condition, not a punchline)

Drinking and Mental Health

assorted-color bottle lot on shelf

There is one drug is the world that is, I would argue, more harmful than any of the others. Completely legal in the vast majority of countries, it makes you feel sociable when you’re shy, warm when you’re cold, and happy when you’re flat. Not only socially acceptable, but socially encouraged, it is nevertheless addictive and a cause of many a premature death.

What I’m talking about is, of course, alcohol.

It has been one month and four days since I have last had any.

I realise the counting of the days makes me sound like an alcoholic, but I just like counting. I was not, and am not, an alcoholic by any means. My body was not dependent on the substance at all. I did not get the shakes. I did not get the sweats. I did not get the cravings.

But, like a lot of people in the UK, my life entailed a lot of post-work drinks and pre-drink drinks, and it took me far too long to realise that this was no good. It wasn’t just that I was drinking more than the recommended limit of 14 units a week, that alcohol can cause liver disease, cancer, pancreatitis, brain damage, osteoporosis, and heart disease.

It was that alcohol is a furious depressant, can not only interact with anti-depressant medication but cause depression: the condition I’ve been putting up with for years.

So, I made the decision to stop: to cut it out entirely for a least a few months, and see where it takes me.

Despite what I thought, I don’t miss it at all. I still go out. I still make memories with my friends. I still have half-hour friendships with strangers outside bars. It’s just that I do it holding a Diet Coke in my hand (yes, I know, not the healthiest of drinks, but whatever).

I cannot deny that my mood has stabilised since I’ve quit the booze. I’ve also lost a few pounds, and am far more productive than I was: reading and writing much more.

In some ways, it’s socially unacceptable to be teetotal in the UK. Drinking is so engrained in our culture, so celebrated as a way of life, that people look at you baffled if you are drinking just a fizzy drink on a night out.

I should know: I was a bartender for two years. People here like to get sloshed. A lot. If someone said they just wanted a Diet Coke at eleven p-m on a Friday night, I would be taken aback, and probably give them that shit for free, because soda costs bars pennies and if someone is not contributing to our drinking culture, then that’s only a good thing.

I’m planning on having a drink on my twenty-sixth birthday in July. I plan to savour the taste, feel the warmth extend to my heart and have it (most probably) go straight to my head. I won’t fall off the wagon: moderation is the way forward for me. I have had too many depressive episodes for my liking. If quitting the booze will help them subside, or better yet, disappear, then that can only be a good thing.

Nevertheless, I’m sure that quitting alcohol won’t “cure” me of my depression. I also need therapy, healthy hobbies, a direction in life, exercise and the right medicine. It’s just one step in the right direction: one step that so far, I’m very glad I made.

Things People Actually Have Said to Me About My OCD, Autism, Tourette’s and Depression

assorted medication tables and capsules

  • That a vitamin could cure my depression
  • That I couldn’t be autistic because I was in a relationship
  • That I couldn’t be autistic because I used to work in a bar
  • That I couldn’t have Tourette’s because I used to work in a bar
  • That I was ‘putting on’ my Tourette’s because I had read about it somewhere and was imitating its symptoms
  • That my OCD was a ‘good thing’
  • That everyone is a little bit OCD
  • That everyone is a little bit autistic
  • That everyone gets depression
  • That if I really understood my Tourette’s I would be able to control it
  • That I should just “think the bad word in my head” instead of saying it out loud
  • That I should just ‘calm down’ when having a literal tic attack
  • That my depression was ‘all in my head’
  • That I didn’t deserve my depression 

Most People Don’t Swear but I Do

woman raising middle finger

Whenever I meet new people and I have to explain that I have Tourette’s, I make sure to explain that I am an anomaly.

Firstly, I’m a woman and Tourette’s normally affects males.

Secondly, I got Tourette’s in my twenties and most people get it when they are aged six to seven.

Thirdly, most people with Tourette’s don’t experience coprolalia – the compulsion to swear – and I sure as hell do.

In this sense, I am a walking, talking, yelling stereotype of the condition, because most people with the condition just equate Tourette’s with yelling out curse words. And I yell out curse words. A lot.

In some ways, I feel I’m letting the Tourette’s “community” down (hate that word – it’s not like we’re all in the same WhatsApp group or anything) for being so sweary. A lot of people with the condition have it quite badly and don’t ever utter an expletive involuntarily, and they have to live their lives explains that only 10 to 25 percent of Touretters swear involuntarily.

It’s a statistic I make sure to repeat as often as I can, because I don’t want to be purporting the myth that all Touretters swear involuntarily as I walk around swearing involuntarily.

In some ways, because I fit the media stereotype of Tourette’s, my life is easier. I don’t have to explain what I’m doing because my Tourettic symptoms align with people’s preconceptions. Instead, I just choose too, deciding to explain Tourette’s as thoroughly as I can, from the blissfully ignorant strangers I meet in bars to the people “whose cousin has Tourette’s too”. (Seriously, I’ve heard that sentence so much, I’ve come to believe everyone has a cousin with Tourette’s.)

I guess it’s my way of “doing my bit”. I’ve got this thing, and I’ve got it forever. I might as well tell the world about it.

No, Tourette’s is Not Necessarily Indicative of a Touretter’s Emotional State

No text overlay on red background

This. Is. So. Annoying.

So often, whenever I’m ticcing, people will ask me/automatically assume that I’m ticcing because I’m:

  1. Anxious
  2. Stressed
  3. Somehow distressed

In some ways, this is a natural assumption, as if I am yelling “FUCK!”, “I HATE YOU AND YOUR EYEBROWS!” or “MOVE IT, LADY!”, it would be natural to assume I am not in the best of moods.

And it cues a barrage of questions: “What’s up?”, “You OK?”, “What’s the matter?”.

Yes, they’re just being nice and concerned and I’m just being grumpy about it, but nevertheless…This. Is. So. Annoying.

People with Tourette’s tic every day. They tic when they’re happy, sad, jealous, envious, excited, relaxing, stressing, washing, sleeping, eating. It’s the condition that doesn’t stop.

Yes, certain people with Tourette’s find that certain moods will cause them to tic more frequently than normal.

For instance, sometimes, if I’m tired or relaxing, I’ll find myself letting my tics loose. Occasionally, when I’m overwhelmed by a busy environment, I’ll find myself ticcing a little more. But that’s about it. Mostly, whenever I’m ticcing, I’m, well, fine? I can be in the best of moods, at peace with the world, on top of the world, and be ticcing like a clock.

Tourette’s is so fucking complicated. No one really knows what causes it. No one really knows what makes people tic. No one really knows why the medications used to treat it actually work.

Ticcing isn’t indicative of someone’s emotional state. All it is indicative of is that they have Tourette’s. So, if you ask me when I’m ticcing when I’m ticcing, I’ll say it’s because I have Tourette’s. It’s as simple, or, rather, as complicated, as that.

Working with Mental Illness

nathan-dumlao-608719-unsplash

When I was nineteen, six years ago, I had to take a year out of university because I was suffering from depression. I had had bouts before and have had bouts since, but nothing has quite matched that one. This depression was an all-encompassing hopelessness, an abyss of “nothing matters”, “what is the point”, and “I don’t deserve to feel happy”. The full shebang, basically.

During my time off, I worked in a pub in the middle of nowhere. The stress of being the only bartender sometimes got to me. Every couple of weeks, I would randomly burst into tears. But this wasn’t the solitary single tear down the cheek kind of crying. This was the-world-has-ended kind of crying, the everything-is-lost kind of crying, the-my-life-has-gone-tits-up kind of crying. The type where I started crying about screwing up an order and ended up crying about crying and then crying about crying about crying. I felt pathetic.

The second time it happened, the assistant manager found me curled up in the staff room upstairs, and asked me what was going on.

“I have depression,” I said.

I can’t remember what she said in response exactly, only that she was going to tell the other managers, which she apparently did, because the next week, my boss said to me, “Why are you depressed? Do you have kids? Do you have a mortgage? Do you have bills?”

He didn’t talk to me with empathy. He didn’t talk to me with sympathy. He sure as hell didn’t talk to me about reasonable adjustments. He just told me I didn’t deserve the unhappiness I felt, kept on saying things like “it’s all in your head,” and in turn, I felt even worse.

The experience taught me to keep schtum about my mental health, or lack thereof, in the workplace.

It wasn’t until about a month ago that I had to disclose my mental health problems to my bosses again. Fortunately, I wasn’t still stuck in that pub. Unfortunately, the diagnoses had since amassed and I now had an overabundance of psychiatric and neurological acronyms.

The reason I had to disclose my mental health issues was the same: I couldn’t stop crying.

This time, though, things were different. I was booked a taxi home and told to take as much time off as I needed. I would still get paid. I would still have a job to go back to. I wouldn’t need to provide a sick note or anything. I just told them my mental health was throwing a wobbly and they didn’t pry any further.

I couldn’t have been more pleasantly surprised.

But in some ways, I shouldn’t have been surprised at all. Treating someone with a mental illness at work shouldn’t be any different from treating someone with a physical illness at work.

I was unlucky to have an unsupportive employer when I was so young, but lucky to have such a supportive employer so recently. However, my hope is that one day luck won’t play into it. One day, mental health issues will be taken as seriously as they should be, and no one will ever have to be told they don’t deserve the illness they never asked for in the first place.

 

 

Actually Autistic

Screenshot 2019-04-11 at 16.51.58.png

I’m autistic, actually. This not a sentence I go around telling anyone and everyone, but what the hell, it’s out there now.

My silence was for a number of reasons.

Firstly, a silly part of me thinks I’m too high-functioning to deserve the diagnosis. A spectrum disorder, some people need a lot more care and support than I do to make their way through life. I’m largely independent, can hold down a job and relationship, and, having lovely family and friends, am not half as isolated as some people on the spectrum.

Secondly, people’s perceptions of autism are, well, usually wrong. So often, the stereotype is of a male maths whizz who is socially awkward, aloof. I already have to battle with the stereotypes of Tourette’s. To battle with more stereotypes seems a bit too much of an effort I just don’t need.

Thirdly, I don’t want autism to define me. It makes me who I am, of course. But I don’t want to be labelled as Alice the autistic woman. I’m just a person who happens to be on the spectrum. My personality is bigger than the diagnostic criteria for ASD.

But I am, most definitely autistic. I have the “right” comorbidities: Tourette’s, OCD, depression. I get obsessively passionate about subjects: music mostly, but also ads and TV shows. I take things literally, hating metaphors such as “it’s no skin off my nose”, because I literally think of skin coming off a nose. I also can get overwhelmed by loud sounds and crowds, have an excellent memory and an eye-for-detail.

One doctor said he didn’t believe I had autism because I was previously a bartender: a job he deemed impossible for autistic people to do.

That’s crap, of course. An excellent memory for cocktail specs is a boon in the bartending industry, and interacting with drunk people is the easiest thing in the world (hint: you can say anything).

So, I’m autistic, and I’m going to be talking about it more from now on. Because, if every high-functioning female on the spectrum were to remain silent as I have been, then society’s stereotypes will never change, and that, of course, would be a terrible shame.