‘What do you mean you’re tired? You’ve been home all day!’
“Just wait until you work 60 hours a week and you’ll know how exhausted it really feels!”
‘Come on out, you don’t have to stay long. Stop being boring!’
I’m sure most of these things—and the countless others that have been said to me over the years—have been spoken without malice, but that doesn’t make the words any less painful.
As someone who was diagnosed with Tourette’s and OCD at age 18, has autism at age 23 and in the years since, has found it easier to figure out which mental health problems I don’t have as opposed to the ones I do have, consider I define myself as someone with an above average knowledge of mental health and mental exhaustion.
Take two of my most common tics. The first one I can only describe is a sound you would make if… trying to make an impression of a disgruntled horse. The second, meanwhile, sounds like all the oxygen is being squeezed out of your lungs.
Unless you’re playing the lead role of a judgmental horse in a pantomime that gets punched in the stomach by the bad guy, these aren’t sounds useful on 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 this happening every minute for an entire day.
I often compare it to a pint glass filled to the brim. Does anyone ever complain that their drink is too heavy? Of course not. Now, however, try holding that same glass at arm’s length for 12 hours. I can imagine it would probably starts to hurt around 10 minutes. It is clear that you just put the glass on the table.
Unfortunately, with Tourette, it’s not something you can just walk away from. Imagine that the pint glass is your body trying to move or your mouth trying to produce sound, and your arm is your brain trying to control everything at once.
Now let me move on to my OCD. Not satisfied with making a movement or sound once, I have to do things five times. That is, if I didn’t make a mistake in one of the five times. If I did, I’ll have to do five more along with one more to make up for the mistake in the first set.
Finally, I’m done. Unless of course I also made a mistake with the recovery set of five, then the cycle starts again.
Confused? I don’t blame you. It’s not the easiest to understand.
This is my experience of every minute of every day
You see, My brain doesn’t feel right until I’m sure I’ve done everything right. What are the criteria for ‘doing it right’? I wish I could tell you, all I know is the feeling of ‘Oh, that was good’ afterwards.
Then, for the record, my autism then plays its hand, analyzing and critiquing each element itself. I wondered why I was making those noises or performing that action specifically. Was it the same as I did before? Did it feel different? Is it a common tic? Can I do it again, but faster? Why am I asking myself these questions? I’ve totally missed this part of my favorite series episode now, time to rewind.
Oh shit, now I have 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 give a glimpse of Darth Vader’s breathing for good measure (because I watched a YouTube tutorial at 4am that morning). But not once, five times.
I’m all too aware of how utterly strange this sounds, but honestly, this is my experience every minute of every day. Of course that’s when I’m home.
When I’m in public it’s a whole different ball game. Of course I can’t walk around in a supermarket whistling, clicking, whinnying, laughing and cursing with all my heart. Instead of, I must muster all the strength I can to curb the frenetic electrical impulses flying around my body at speeds Usain Bolt would envy.
This is again where the pint glass example comes in handy. Only this time with the added fear and shame if, God forbid, a tic manages to sneak past my heavily guarded firewall. I’ve had looks of confusion and judgment, laughter and grins, not-so-subtle pointing and, a few times, confrontation.
Imagine the sense of delight the whole restaurant feels when you hear a tray of glasses break on the floor, a poor person is then forced to emerge from behind the bar to the chorus of ‘Waheyyyyy!’ That’s how it feels, only you risk dropping the tray every few seconds. Cue the self-loathing that comes with every embarrassing moment.
It should come as no surprise that just as a massive session at the gym can hurt your body for days, so as a constant in everyday life, so too does a tremendous amount of fatigue.
The problem though it is not a socially acceptable form of fatigue.
You can upload a video to social media if you just broke your personal best for deadlift. You get likes and congratulations. That’s because it’s hugely impressive and you should be proud of yourself for doing this, no wonder you’re broke!
However, there is nothing commendable about doing a weekly shopping, completing a shift at work, having a dentist appointment, going to the cinema, eating with friends. These are all tasks that the vast majority of people don’t need to think about. For the outgoing people out there, they can be energetic and uplifting.
So, even if you have no ill intent, try not to criticize anyone if they have the courage to be vulnerable and say, “I just don’t have the energy today.”
After all, they may have been rehearsing all day for their dream role of a panto horse with a breathing problem similar to Darth Vader, and they could use some rest.
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