‘What do you mean you’re tired? You’ve been at home all day!’
‘Wait until you’re working 60 hours a week, then you’ll know what exhausted really feels like!’
‘Just come out, you don’t have to stay for long. Stop being boring!’
I’m certain most of these things – and the countless others that have been said to me over the years – were spoken without malice but that doesn’t make the words sting any less.
As someone who was diagnosed with Tourette’s and OCD at 18, autism at 23 and, in the years following, has found it easier figuring out what mental health difficulties I don’t have as opposed to the ones I do, I consider myself someone with an above average knowledge of mental health and mental exhaustion.
Take two of my most common tics. The first I can only describe is a noise you’d make when attempting an impression of a dissatisfied horse. The second, meanwhile, sounds like you’re having all the oxygen squeezed out of your lungs.
Now, unless you’re playing the front part of a judgemental horse in a pantomime who is punched in the stomach by the villain, these aren’t sounds that are helpful in your average day.
That’s Tourette’s for you. It’s when your body produces a sudden movement or sound that you have either zero – or very, very little – control over. Imagine that happening every minute throughout an entire day.
I often compare it to holding a pint glass filled to the brim. Does anyone ever complain that their drink is too heavy? Of course not. However, now try holding that same glass at arm’s length for 12 hours. I’d imagine it would probably start to get sore around the 10 minute mark. Obviously, you’d just put the glass down on a table.
Unfortunately, with Tourette’s it isn’t something you can just walk away from. Imagine the pint glass is your body trying to move or your mouth trying to produce sound, and your arm is your brain trying to keep everything under control at once.
Now, let me move onto my OCD. Not content with just making a movement or sound once, I have to do things five times. That is, of course, if I didn’t make a mistake in one of the five times. If I did, then that’s another five I have to do, along with another single one to make up for the error in the first set.
Finally, I’m finished. Unless, of course, I also made a mistake with the recovery set of five, then the cycle begins again.
Confused? I don’t blame you. It’s not the simplest to understand.
This is my experience of every minute of every day
You see, my brain doesn’t feel good until I’m certain I’ve done everything correctly. What’s the criteria for ‘doing it correctly’? I wish I could tell you, all I know is the feeling of ‘Oh, that was good’ afterwards.
Then, for good measure, my autism then plays its hand, self-analysing and criticising every element. Wondering why I made those noises or performed that action specifically. Was it the same as I did earlier? Did it feel any different? Is it a common tic? Can I do it again, but quicker? Why am I asking myself these questions? I’ve now completely missed this part of the episode of my favourite series, time to rewind.
Oh, crap, now I’ve got to do it again, only this time I also want to stand on one leg while stretching the other to a perfect 90 degree angle. I’ll also throw in an impression of Darth Vader breathing for good measure (because I’d watched a YouTube tutorial at four o’clock that morning). Not just once though, five times.
I’m all too aware how utterly strange this sounds but, honestly, this is my experience of every minute of every day. That is, of course, when I’m at home.
When I am out in public, it’s a whole different ball game. I obviously cannot be walking around a supermarket while whistling, clicking, neighing, laughing and swearing at the top of my voice. Instead, I have to muster all the strength I can to contain the frenetic electrical impulses that are flying around my body at speeds Usain Bolt would be envious of.
This is, again, where the pint glass example comes in handy. Only this time with the added fear and embarrassment if, God forbid, a tic manages to sneak past my heavily guarded firewall. I’ve had looks of confusion and judgement, laughter and smirks, not-so-subtle pointing and, a few times, confrontation.
Imagine the feeling of delight the whole restaurant feels when you hear a tray of glasses smash on the floor, some poor person then has to emerge from behind the bar to a chorus of ‘Waheyyyyy!’ That’s what it feels like, only you’re at risk of dropping the tray every few seconds. Cue the self-loathing that accompanies any embarrassing moment.
It shouldn’t come as any surprise that, just like a mammoth session at the gym can leave your body aching for days, having this as a constant in daily life also brings about a huge amount of tiredness.
The problem, however, it’s not a socially acceptable type of fatigue.
You can upload a video to social media when you’ve just smashed your deadlift personal best. You get likes and congratulatory comments. That’s because it’s hugely impressive and you should feel proud of yourself for doing so no wonder you’re knackered!
However, there’s nothing praiseworthy about doing a weekly food shop, completing a shift at work, having a dentist appointment, going to the cinema, eating dinner with friends. These are all tasks which, for the overwhelming majority of people, don’t require a second thought. For the extroverts out there, they can be energising and uplifting.
So, even if you have no ill-intentions, try not to criticise anyone if they have the courage to be vulnerable and say ‘I just don’t have the energy today.’
After all, they may have spent the whole day rehearsing for their dream role of a panto horse with a breathing problem akin to Darth Vader, and could do with a rest.
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