It’s OK to Hate Being Chronically Ill

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There are a lot of disability advocates out there promoting how disability and neurodiversity can be an excellent addition to the world, enrich our lives and be a boon to society.

This is, in my opinion an excellent conversation to be having.

After all, there is so much negative language surrounding disabilities and neurodiversity. We talk about people being “confined” to a wheelchair when they might as well see themselves as being liberated by their wheelchair. We talk about people “suffering” from autism when, I for one, do no such thing.

I don’t see my autism as an illness, it’s a condition I happen to have and it makes me who I am – the good bits and the bad.

But the same doesn’t go for my Tourette’s. I see my Tourette’s as an illness. It’s a chronic and incurable pain in the arse. I hate it. It’s done me no good. It’s made it hard to find work and keep work when I’ve got work. It’s made life awkward, embarrassing and oftentimes physically painful. It cost me one relationship when an ex decided to tell me she thought I was “putting on” my tics because I’d read about Tourette’s somewhere.

Opinions differ across the community. Some people with Tourette’s wouldn’t want to do away with it at all, saying it makes them who they are. Other people go through extensive treatments and therapies to try to rid themselves of their most problematic tics.

What I’m trying to say is, it’s all right to embrace one aspect of your neurodiversity and dislike another aspect of your neurodiversity. It’s all right to hate being chronically ill. It’s all right to love and hate your difference at the same time.

Being neurodiverse in a neurotypical world is difficult. All opinions and feelings are valid.

How Not To Meet Someone with Tourette’s

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  • 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)

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

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  • 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

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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

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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.

Actually Autistic

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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.

Nine-Nine-Nine

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I was outside on a freezing night when my legs gave way.

With my Tourette’s, my knees do buckle sometimes and before I know it, I’m on the ground. Normally, I get right back up again, brush the mud off my knees, and carry on in much the same way as before.

This time, though, things were a little different. Unable to get back up again, my body began shaking and jerking. From the outside, it must have looked like I was either a) having some kind of seizure, or b) was blind drunk and collapsed on the floor.

Of course, what I was having was a tic attack: a wave of near-constant and uncontrollable tics.

Security were quick to come over and call an ambulance. When they arrived, over forty-five minutes had passed since I had been on the ground convulsing.

The first thing I heard paramedic say was, “This is not a seizure, I’ve seen a seizure.”

In response, what I didn’t say was: This isn’t a seizure in the epileptic sense. This is something called a tic seizure, a tic attack, a tic fit. It is a stream of intense, debilitating tics. There is a lack of literature on the subject so you may not be aware of the phenomenon. The episodes can last for hours and are exhausting.

Instead, what I said was: “FUCK!” “GET YOUR HANDS OFF ME!” “PISS HEAD!”.

“Come on, stop it,” the paramedic said as he hauled me to my feet and my legs buckled for the umpteenth time.

Stop it. Just stop it. The times people have told me to just stop it, to just shut up, to just “think of the bad word in my head instead of saying it out loud”.

Funnily enough, Tourette’s doesn’t work that way. I continued to shake and groan whilst the paramedics started to drag me home.

“You can walk, I know you can walk,” the paramedic said.

I couldn’t walk. Well, I could. But for like two steps before my legs gave way again.

The five-minute journey home took God knows how long.

It was an upsetting experience, to say the least. The lack of empathy and understanding and knowledge was quite frankly shocking.

“You could have been kinder,” I said to them, as we crossed the threshold to my flat, by which time I had regained some of my ability to talk. Perhaps it was rude of me to say to two extremely tired, over-worked and under-paid paramedics, but it was true: they could have been kinder.

“We got you home,” was their response.

Yes, they had got me home, but they had literally dragged me instead of using the wheelchair in the back of their ambulance.

Yes, they had got me home, but now all I wanted to do was cry all night.

Yes, they had got me home, but two strangers off the street would have probably been nicer than they had been.

Now, if someone ever suggests calling nine-nine-nine for one of my tic attacks, I know what to do: snatch the phone off them and throw it into the river.

The reason being: the awareness and understanding just isn’t there. People just don’t get Tourette’s, medics included.