Conor Maysey was diagnosed with Tourette Syndrome, or TS, in his early 20s. You can hear Conor share his story on the latest episode of our podcast, Embracing the Mind, released today. Below is Conor’s story on what living with TS feels like.
I want you to imagine you’ve started a new job. It's great because it runs parallel to your current life and all you have to do is carry around an old school Nokia mobile phone at all times and address messages as they come through. For years it's easy and you have no problem carrying the phone wherever you go, there’s only maybe 2-3 messages a day most days so you simply set it to silent and go about as usual.
It’s a Tuesday morning when the messages begin to flood in, so many that your phone switches itself to vibrate to warn you of the incoming deluge, a mountain of messages but still barely any from your boss; it’s all service notifications, adverts and spam. Annoying, yes, but you quickly get the hang of knowing what’s important and what's just noise, you’ve had plenty of practice with your email inbox.
The phone is stuck on vibrate now and the ever-growing number of messages makes keeping a healthy work-life balance difficult. More effort and attention is required each day as the spam becomes increasingly cunning to gain your attention. Worse still, something out there has begun to send you things, things disguised as important messages from your boss, things that sicken you to your stomach, your brief exposure to them ruining any chance you had of having a positive day. You plead with your boss to do something about the messages, for them to make their instructions clearer, but you are given nothing but indifferent silence.
The messages have slowed down in recent days, and you begin to feel lighter and more yourself. In a moment of excitement, you agree to attend the graduation of someone close to you; you decide it’ll be good to get out and ignore the incessant movement of the mobile phone in your pocket for a while. You arrive at the venue early and do your best to get comfortable in your seat, the phone is gently vibrating in your pocket, but you don’t even notice it any more. The auditorium begins to slowly fill up and the vibrating in your pocket begins to build along with the crowd, you’re aware of it once more and you’re sure that the people taking their seats nearby are too.
“Why is everyone looking at me??
“They must think I’m so rude not turning it off.”
“What if they come over and tell me it’s bothering them?”
“Did that guy just leave to get a security guard?”
“I’m embarrassing my friend, this isn’t about me.”
“Maybe I should just leave and not ruin this for everyone else.”
Your thoughts run rampant as you do everything you can to mask and obscure what feels like a swarm of wasps in your pocket, their angry buzzing hitting a crescendo in time with your anxiety-laced thoughts. The room is full now and you briefly lock eyes with a stranger across the aisle. You’re sure you can feel their silent judgment. The crowd slowly falls silent as the host takes the stage, the spotlight hits them and you can feel the weight of the silence burying you in your seat. The host takes a bow and begins to pull a microphone from its stand, you can feel the anticipation of the crowd as he prepares to speak. And that's when it rings.
You can feel the gaze of everyone in the room snap in your direction as the phone in your pocket begins to ring more and more loudly. The host stares at you bewildered, the pair of you like deer in headlights, frozen, unsure what to do. You do your best to apologize silently as you reject the call and slump deep into your seat, wishing to be invisible. You can still feel the eyes and hear the mutters of the crowd around you as the host finally begins the ceremony. The host does their best to ignore it and carry on with the show, but the phone begins to ring more and more frequently it feels like the quicker you reject the call the quicker they call back, the ringtones are getting more and more inappropriate too. The more people look, the worse the ringtone seems to be and the angrier you can feel people getting around you. You wish you could just be quiet and enjoy the moment but the crowd around you continues to bubble with conversation and you can feel the gaze of the room upon you with each and every ring.
This story is a small window into what it feels like to try and navigate the world as a person with Tourette Syndrome. The messages represent the thoughts and feelings that are passed to your consciousness by your brain. The vibration represents the motor tics that occur almost constantly alongside the stream of thoughts that run through a brain with TS. Finally, the ringing represents vocal tics and shows how anxiety and the stress caused by the public reaction can exacerbate the problem.