I Hate Mindfulness

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The early twentieth century gave us psychoanalysis, the late twentieth century gave us cognitive behavioural therapy, and then came mindfulness. Stemming from the meditative practices of Buddhist monks – a demographic who experience very little depression or anxiety – mindfulness has been lauded as a treatment for myriad conditions, including but not limited to: depression, anxiety, insomnia, ADHD, chronic pain, and yes, Tourette’s.

As someone who’s prone to mental health wobblies, professionals have been advising me to take up mindfulness for years, initially with my depression in mind.

Please believe me when I say I tried. I downloaded the apps and even paid for subscriptions. I put up with Headspace’s Andrew telling me to have a “nice soft gaze” for the umpteenth time. I sat down at the same time every day, trying to be aware as possible of my breathing.

Through it all, my friends, dizzied by their recent mindfulness epiphanies, raved about the benefits to me: mindfulness increases concentration and focus, decreases stress, eliminates anxiety.

And I’m sure they’re right. I sure they did feel more focused, less stressed and less anxious, because there is concrete evidence that mindfulness is the way forward for treating depression, anxiety and its related symptoms.

But whatever it is, mindfulness isn’t a panacea. As someone with Tourette’s, it is so hard it’s basically impossible. After all, a requirement of the practice is sitting still and shutting up: a challenge for someone with a condition that makes you speak and move randomly.

Much to my dismay, when I did try mindfulness, I actually found that meditating actually exacerbated my tics instead of alleviating them. I would writhe, twitch and yell when I was supposed to be quiet and still.

Thankfully, I have found plenty of things which have helped my depression which aren’t mindfulness, and a couple of things which have even helped my Tourette’s too.

Things that have helped my depression which aren’t mindfulness:

  • A gentle jog or leisurely walk
  • Sitting in the sun, even if it’s for five minutes, and even if it’s cold out
  • Cooking a healthy meal and then eating it
  • Having a good old chin wag with a friend and a glass of wine
  • Being creative: writing a little story, blog post, drawing a picture, colouring in
  • Taking a bath
  • Dressing smartly even if I’m not leaving the house
  • Getting a haircut
  • Sleeping well
  • Kurt Vonnegut
  • Time

Things that have helped my Tourette’s which aren’t mindfulness:

  • Aripiprazole
  • Clonazepam

Of course, none of these things have cured my depression or Tourette’s, but that said, they have helped a bit, which is more than I can say for mindfulness. I think the truth is that there is no one-size-fits-all when it comes to treating these conditions. After all, each person’s brain is different, and just like some people respond to certain medications but not others, it’s only logical that some people are going to respond to some therapies and not others. And that, I would suggest, is quite alright.

More Questions People Ask People with Tourette’s

  • Why do people with Tourette’s swear and not tic “nice” words?

Firstly, only 10 to 25 percent of people with Tourette’s experience coprolalia. Secondly, I tic lots of nice words (“Lemon”, “Botticelli”, “woo hoo”). Thirdly, no one really knows why certain words become tics and not others.

  • What would happen if you didn’t know any swear words?

If, hypothetically, you didn’t know any swear words, then you would tic other rude things. For instance, yelling “you’re fat” to someone who’s chubby, “get hair” to someone who’s bald, or “I hate you” to someone who may or may not inspire in you such a feeling.

  • Have you ever got into trouble because of your Tourette’s?

Sometimes people ask me what I’m doing in a rather irritated way, but I just explain I have Tourette’s and then they’ve always been fine with it. I think it helps to be a woman in these circumstances.

  • How do you sleep?

My tics vastly reduce when I’m asleep, so I have no problems with insomnia due to Tourette’s. However, getting to sleep can sometimes be tough. Often, I’ll tic while I’m half-asleep and wake myself up. This is annoying.

  • Is there any medication for it?

Yes – antipsychotics are used even though psychosis has nothing to do with Tourette’s. These aren’t for everyone as many people suffer quite badly with the side-effects which are sometimes worse than the tics themselves. Also, the drugs don’t work for everyone. Unfortunately, there is no cure for this condition and even if medication is helpful for some people, it’s not going to get rid of the tics entirely.

  • What triggered you getting Tourette’s?

When people ask this, I assume they think Tourette’s is like a mental illness caused by a stressful life event. This isn’t really the case. Tourette’s is neurological – it happens because there is something wrong with your basal ganglia. It’s often inherited but not always, and is more likely to occur if you have things like ADHD and OCD running in your family. As such, nothing triggered my Tourette’s. It just happened.

  • How does a tic feel?

Like this. But also like you’re a puppet being controlled by some hyperactive and rude five-year old child, and also a bit like you’re possessed.

Dealing with Racist Tics

I thought I’d had all the bad tics.

After all, I’ve punched windows, slapped friends, thrown a glass at my manager, shouted out the f-word, c-word and s-word, yelled “pigs” at police officers, and hit my head repeatedly against a wall.

I was wrong. It turns that things could get worse. Now, regrettably, my Tourette’s is coming out with racial slurs: an unfortunate but rare facet of coprolalia.

This is obviously awkward, to say the least. Now, it seems I’m going to be offending a lot more people, at a much deeper level.

At a loss as to what to do, I asked the internet for advice, and this is what everyone said:

  • Explain quickly to anyone who has overheard my racist tics that I have Tourette’s.
  • Wear a badge saying I have Tourette’s.
  • Try to turn the vocal tics into “mental tics”. “Mental tics” is not a medical term, it’s just what I call the silent tics that interrupt my thoughts. They feel much like an intrusive thought, but it’s made up of words instead of images.
  • Switch the tic. For example, if the racist tic is coming out, sometimes it’s possible to switch the word to something else half-way through.
  • Alternatively, if the tic has to come out, say something that rhymes with the offensive word instead.

It’s early days – I only started ticcing racial slurs a few days ago – but I’ve since found that tic-switching and finding a rhyming word really works for me.

As general rule, I find that tics come and go. I can’t wait for this one to go away, but for now I’m putting the internet’s advice into practice, and taking each tic as it comes.

What Are You Laughing At?

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The other day – I had a catch up with someone I used to know. We hadn’t seen each other in almost a year. During our meeting. I told him about what I’d been up to, the jobs I’d been working, and the books I’d been reading. I also told him about the months where my Tourette’s had been pretty bad.

“I even had trouble walking,” I said.

“How?” he asked.

“I would just keep falling over,” I said.

My former friend then took this opportunity to laugh as if not being able to walk were the funniest thing in the world.

“I’m sorry,” he said, not sounding sorry at all. “It’s just so funny.”

I was little bit confused. I didn’t remember not being able walk as being funny at all. It was, at the time, incredibly frustrating not being able to get from A to B without staggering all over the place.

But the encounter, and my acquaintance’s reaction, got me thinking. Is Tourette’s funny? In my experience, people certainly seem to think so. Sometimes, I only have to tell people I have Tourette’s and they laugh.

This can be annoying, especially when my Tourette’s is playing up. I have had, in no particular order, tics in my legs which have impaired my walking, tics in my eyes which have impaired my sight, tics in my lungs which have impaired my breathing, tics in my arms which have made me punch walls, tics in my arms which have made me punch windows, tics in my arms which have made me punch mirrors, and tics in my arms which have made me punch my face. None of these have been particularly humorous.

Most of the time, though, people don’t think of these kinds of tics when they think of Tourette’s. When they think of Tourette’s, they think of one thing: coprolalia – the compulsion to utter expletives and other socially inappropriate phrases, something which affects only 10 to 25 percent of people with Tourette’s.

Admittedly, a condition which makes you do something bizarre as swear compulsively does sound quite funny. The problem is, though, that is although it sometimes has a humorous side, coprolalia is more often than not embarrassing, isolating, and downright awkward. Indeed, it would be fair to say that most of coprolalia isn’t funny at all.

Despite all the un-funny tics Tourette’s can throw at you, despite the fact that the condition can be a cause of social isolation, unemployment, bullying, and embarrassment, if you listen out for them, you’ll hear many jokes where Tourette’s is a punchline. For some reason, it is socially acceptable to mock Tourette’s in a way that it isn’t with other disabilities.

Although laughter might be an excellent medicine, the culture of poking fun at Tourette’s has had many negative effects on those with the condition. Thanks to the innumerable Tourette’s jokes out there, the struggles people with Tourette’s go through are laughed off to such an extent that some even go so far as to say they wish they had the condition.

Ultimately, the comedy surrounding Tourette’s is due to a lack of understanding, and it’s this lack of understanding which makes having the condition far more isolating than it needs to be.

 

 

Bad Language

Yesterday, I read an article about a concert pianist with Tourette’s. The article recounted how the man, a former child prodigy, has faced a lifetime of rejection from orchestras, something which he attributes to his potential employers being unwilling to deal with his condition.

The article sounded entirely plausible. No matter how talented or intelligent you are, it can be incredibly hard to find employment when you have Tourette’s. In my case, one employer told me that they didn’t think they could hire me because of the “duty of care” they had to the customer. Situations like these are all-too-common, and the article shed some light on to what people with Tourette’s have to put up with, and how hard cases of discrimination can be to prove.

Even though overall it was a positive article, I did find it unfortunate when the author decided to write that, eventually, the man “conquered” his Tourette’s. For me, this was an inaccurate and somewhat bizarre choice of vocabulary.

From the sounds of it, this man was one of those with Tourette’s who find that their symptoms alleviate with age. However, even if this was the case, the man wasn’t “conquering” anything. Tourette’s is a chronic, incurable condition. It can’t be “conquered”.

To say that the man conquered his Tourette’s is to say a) you can win against Tourette’s if you try hard enough, b) anyone with Tourette’s can “fight” the condition c) those whose symptoms persist despite their age are losing somehow.

Basically, it’s just not a great thing to say.

The problem is, people often use bellicose language when describing people’s relationship with their medical conditions. We often hear of people’s “battle” with a disease, they “fight for their life”, “struggle”, “conquer”, but, ultimately, “lose”.

I’m not sure this kind of language is helpful for anyone. Fighting Tourette’s isn’t an advisable activity, because we simply don’t know enough about Tourette’s to know how to fight it. We don’t know what causes it and what doesn’t, why some medications work for some and not others, why some people grow out of their symptoms and why some people don’t.

It can be a really hard thing to do, but when you have Tourette’s, it’s important to accept that you have Tourette’s, to go with its ups and downs, and to realise that raging against it will get you precisely nowhere.

Pros and Cons of Having Tourette’s

Pros:

  • Sometimes, it’s funny.

Cons:

  • It hurts.
  • It’s embarrassing.
  • It’s exhausting to be ticcing all the time.
  • It can be harder to get or keep a job.
  • You probably have another condition like OCD, ADHD, autism spectrum disorder, depression, anxiety, or all five. All of these comorbid conditions can make life harder to live.
  • People laugh at people with Tourette’s.
  • People stare at people with Tourette’s.
  • People don’t really know what Tourette’s is, meaning that those with the condition have to constantly explain what it is.
  • People think Tourette’s is just about swearing, so if you’re one of the 75 – 90 percent of people with Tourette’s who don’t swear, people accuse you of not having the condition.
  • Tics which are rude or offensive can put you in danger of angering or offending someone.
  • People think people with Tourette’s are just pretending, that they are just saying what they want to say and then acting as though it was a tic.
  • People with Tourette’s have to put up with being the centre of attention.
  • Tourette’s is an incurable, chronic condition.

OCD Is A Mess

The other night I was having a drink with a friend when she used one of my favourite phrases: “I’m a bit OCD.”

Of course, the friend didn’t mean she had a mild case of obsessive compulsive disorder. Instead, she was talking about how she organised her handbag, about how particular she was about it, and how thorough she liked to be.

I let the comment slide, because, in the grand scheme of things, it didn’t really matter. But although the comment didn’t offend me, it did annoy me. My friend is an actual therapist, and she really should have known better.

The term “a bit OCD” is both frustrating and frustratingly familiar. Often, people think it’s OK to use mental health terms in everyday language, and often proclaiming themselves to be “so OCD”, “depressed”, or “having a panic attack”. This shouldn’t be a problem, but it is. Especially when terms like “OCD” come to mean something quite different from their medical meanings.

OCD is everyday language has come to mean “perfectionist”, “particular” or “organised”. But OCD in its true sense is a mess. Below is a guide to the difference between OCD and perfectionism:

  • People will OCD can ruminate over the same thing for hours, weeks, months, or years. These thoughts can centre on anything and be immensely frustrating. Perfectionists don’t do this.
  • People with OCD experience excessive vivid, intrusive thoughts often depicting frightening situations which will never happen. Perfectionists don’t have this.
  • People with OCD can sometimes be hoarders. Their homes will be full of things they do not need and yet cannot let go of. Perfectionists don’t have this.
  • OCD can cause those with it to act out pointless, lengthy rituals by which they check that everything is safe (that they didn’t leave the cooker on, that when they hit that bump in the road it wasn’t actually a person, that the taps aren’t still running and the door really is shut). The person with OCD will know that these time-consuming rituals are irrational, however, they have to act upon them even if they cause them distress. Perfectionists, on the other hand, like things to be in straight lines, in the right order, so they are neat and tidy and look nice.
  • OCD can lead to severe depression. Perfectionism can lead to severe tidiness.
  • OCD is a mental illness which can ruin your life. Perfectionism is a personality trait to put on your CV or covering letter.