What my constant companion taught me: being a young adult with a hidden disability
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Meet my invisible but permanent companion. Contains strong language.
A couple of months after I turned 16, I sat my GCSEs. For those of you unfamiliar, these are delightful little tests that we do at the age of 16, typically in 8–12 subjects, and then a couple of months later, our summers are rudely interrupted by a day on which we must prematurely return to school, and open envelopes containing the results.
It’s safe to say I was a bit highly strung as a student. It’s also safe to say that that’s an understatement.
I may have been a quiet and deeply introverted teenager, but that didn’t mean I wasn’t secretly a mad perfectionist hell-bent on silently being the best in everything.
The trouble with being such a person is that you inevitably get very stressed, and in my case, that arguably triggered the start of an unexpected and disturbing condition.
One night, I went finished my studying and went to bed. The next morning, I woke up. (Riveting story so far, I know.)
I sat up in bed, and exclaimed “f*ck”, before repeating the same word about 10 times at increasing volume. I then hit my chest three times with my right hand balled up into a fist, and then made the peace sign directly in front of my face.
No, that wasn’t normal behaviour for me, not at all. I don’t think I had ever really actually sworn before then. I didn’t like naughty words. It wasn’t me consciously saying this, or gesturing in this way.
Tourette Syndrome has entered the arena
According to the organization “Tourettes Action”:
Tourette Syndrome is an inherited, neurological condition, the key features of which are tics, and involuntary and uncontrollable sounds and movements. TS is a complex condition and a large number of people with the condition will also experience co-occurring features and conditions.
To put it in plain English, Tourettes means you have faulty wiring somewhere that makes you say things and move involuntarily with absolutely no control or intention.
You’ve probably seen it in videos online or TV shows where it’s often used as a punchline. After all, what’s funnier than a person uncontrollably swearing in the most inappropriate situations?
It took a couple of months for me to be formally diagnosed, and in the end, I was the one who raised it to my neurologist, who at the time hadn’t encountered many patients with Tourettes, let alone one like me.
For one, I’m not exaggerating when I say it came on overnight. Maybe I had a stroke during my sleep. Maybe there was a glitch in the fabric of the universe and parallel-Ben suddenly took the place of this-world-Ben. I went to bed without Tourettes, and I woke up with Tourettes.
Secondly, I didn’t just have Tourettes. Friends, I had uncontrollable explosive Tourettes. I was yelling terrible things, swear words, made-up words, even whole sentences uncontrollably, and experiencing severe motor tics that hurt (never anyone else, just me).
The media generally sticks to showing this extreme, but it’s pretty rare. Nowadays, we know that Tourettes is probably pretty common, and in most people with it, may manifest itself as simple sniffing or throat clearing, and barely noticeable movements. The explosive kind is not the normal kind, but it is the most noticeable kind.
Needless to say, I was mortified. (Which is a very middle-class British reaction to waking up one day with explosive Tourettes, I know.)
Isn’t this about invisible disabilities, though?
Yes. In the beginning for me, Tourettes could certainly be heard, but I didn’t necessarily look disabled, to be blunt. Which led to people concluding that the whole ordeal must be in my head or a ploy for attention. This makes sense, because as a card-carrying introvert, I often do wish to be the centre of attention, and I think it’s a great idea to start screaming obscenities in public to get it.
However, as we’ll get to, my Tourettes has calmed down to the extent that I don’t necessarily show symptoms in front of other people. That doesn’t mean it’s not still there, as I’ll tell you, but it’s not like it used to be.
You’re just stressed.
The context at the beginning about my GCSEs isn’t irrelevant. I was under a lot of stress. So naturally, when I was diagnosed with Tourettes, we were struggling to understand why, as it made no sense. The blame quickly landed firmly on stress, and I think this is very common in people who develop conditions post-childhood.
While I certainly was stressed out, I have to be honest: this pissed me off to no end. I’d been stressed before and hadn’t subsequently developed Tourettes. Everyone gets stressed out, and most do not develop Tourettes. It’s not usual to develop Tourettes in response to stress, so for me, it was deeply frustrating to be told that this was probably the cause. More than frustrating; it felt downright dismissive, even trivialising.
I remember a well-meaning doctor explaining to me that people are like kettles. Kettles all boil sometimes, and most of the time, the water bubbles within and does not come out, but for some people, the water bubbles out of the lid and the kettle short-circuits and explodes.
Now, while the intention of the doctor was good, I did not really appreciate being compared to a kettle, and I encountered this kind of well-meaning interaction a lot.
My biggest problem with reducing my Tourettes down to stress was that it didn’t resolve anything. Telling me I’m probably just stressed still doesn’t explain why I woke up with Tourettes, and it doesn’t tell me how to resolve the Tourettes.
Since then, I’ve had other conditions be explained with stress, and each time, ironically, being told it’s because I am stressed stresses. Me. Out.
Fat, gay, and disabled.
If I had to describe myself in three words now, I’d probably say quiet, opinionated, and empathetic. If I had to describe myself in three words between the ages of 16 and 22, I’d have said: “fat, gay, and disabled.”
I’m not saying this for pity. I was overweight thanks to a spiralling eating disorder, which was probably the result of realising I was gay and not telling anyone, which was also only exacerbated by the fact I had Tourettes and couldn’t stop announcing to people that “I’m a gay, I’m a f*g, I’m bloody queer” etc. (This is where my deep appreciation for irony and dark humour stems from.)
I’m saying it because as a very overweight, closeted teenager, I already had a feeling I wouldn’t meet a lot of expectations. I knew I’d never do the whole marriage and kids thing. I knew I’d disappoint my parents as a result. I knew I already wasn’t fitting their image of an energetic young man. I knew I was not good at sports, that I was unfit and probably going to face a whole lot of issues when it came to dating in the future.
The thing with being fat and closeted though: the lowering of my expectations was an internal kind of thing.
When I was diagnosed with Tourettes? It came from other people. The surprise of developing Tourettes and the process of coming to terms with it meant that I wasn’t thinking about long-term life with Tourettes at the beginning. However, it seemed to be all that everyone else thought about. I remember conversations about whether I’d cope at university, and how maybe I shouldn’t go because of the Tourettes. Maybe I shouldn’t take “difficult subjects” at A-Level, because of the Tourettes and the stress (yes, stress again, hi). Maybe I shouldn’t catch the bus to college, because someone might misunderstand my condition and beat me up. Maybe I should invite friends around instead of going out with them for the same reason.
Again, well-intentioned, but to me, I was suddenly facing a barrage of people telling me essentially one thing: lower your expectations.
It came from my family, my friends, my teachers, and even my doctors. Each would bring up the subjects casually because they thought it would be in my best interest. However, it’s easy to say these things when it’s to someone else.
Surprisingly, despite being a teenager with extremely high self-esteem (sarcasm), the appearance of Tourettes didn’t immediately change any of my plans. I still wanted to go to university and study languages, live abroad and work abroad. I didn’t understand why it should.
I want to point something out here. I know for a lot of people, disabilities, hidden or not, can limit the ability to do a lot of things independently or at all. I was very fortunate that with Tourettes, this was only the case in a social sense rather than a physical sense. However:
LIMITATIONS ARE NOT EXPECTATIONS.
Hearing these things made me doubt whether or not I’d be able to do all of these things, but I always had this feeling that that’d be wrong. it wasn’t until my mid-20s that I realised that it’s not a case of lowering my expectations, it means that how I get there will be different and require some flexibility and creativity.
With Tourettes, even now, my energy levels are low. Having constant involuntary movements and vocalisations is tiring. Controlling them, as I have now learned to do largely, expends a lot of energy. That means I’m going to take longer to do things. I’m going to have to cancel or postpone plans sometimes.
Tourettes means that I have to accept that this is the case, but it doesn’t mean that I’m not going to at least try to do whatever I want to.
Additionally — it’s my prerogative to change my expectations. A few years ago, I wanted to start my own business. I started trying and just didn’t have the energy to do it. Even though I wanted to stick with it, I shifted to something that worked for me and found satisfaction in that instead. Now, a few years later, I’m approaching my own business differently. (Spoiler: it involves writing on Medium. Thanks for reading 💖)
Throw everything possible at it!
So, there’s no cure for Tourettes, but there are ways of relieving symptoms. The trouble is, these are very strong medications, and often have very unpleasant side effects, and don’t work in the same way for everyone.
To begin with, I followed recommendations to find a medication to suppress the tics from Tourettes as much as possible.
The first medicine made me put on a considerable amount of weight in just a few weeks, not great for an already overweight and self-conscious teen. Oh, and also it had zero impact on my symptoms.
The second medicine made me so sleepy, I started missing school, and spending 20 hours a day conked out. I’ve been informed I don’t tic in my sleep, so I guess this eased the symptoms, but nope, not an option.
The third medicine did absolutely nothing but didn’t have any side effects.
The fourth was the most fun. It had the opposite effect to the second, and I could not sleep. I was medically at risk of some pretty serious issues due to just how little I was sleeping. I was given sleeping tablets, and these just paralysed me, so I’d lie unable to move, but wide awake mentally.
By the time the fifth medication was being suggested, I’d conclude that I didn’t want to take medication. Each time, either it didn’t help, or it did something worse than the Tourettes itself.
And people were surprised. Surely if there’s something that could help, you’d try it?
I get it, but also respectfully, we have very different definitions of “help” here. I’d rather not be a medically obese drowsy insomniac just for the sake of easing my tics.
One conversation in particular sticks in my mind, though. I won’t say with who, but it was pretty devastating. This person pointed out that my tics disturbed other people, which I was already aware of. I tried my best to be as minimally disruptive in classes, in public, and at home as possible, I did, but it’s not unfair to say that someone yelling obscenities is going to be disruptive. It’s also fine to say it’s annoying because it is. Guess what? It annoyed me more than anyone else.
However, the implication here was that I had some sort of duty to do everything possible not because it would help me, but because it would make things easier for others. Needless to say, I’m not part of this person’s life anymore.
The very phrase “throwing everything at it” doesn’t imply success. It implies doing everything at all costs, and if my physical and mental health are at that cost? No thanks, I’d rather deal with my condition on my terms.
How to actually deal with stress.
I’ve already mentioned, but now, over 14 years after my diagnosis, I’m doing well with my Tourettes. I still have tics, but for the large part, I’m able to control them in a much more sustainable way. I have days sometimes where I have symptoms, but I’m lucky to be able to take these days off work discretely. My acquaintances and recent colleagues don’t know about Tourettes. I’m not hiding it, it’s just not something that comes up casually in most contexts.
It’s taken a while to get to this point, and learning how to deal with stress has been key, and probably the most valuable thing I’ve had to learn because of Tourettes.
The first rule of dealing with stress (for me certainly) is not to listen to other people’s views on stress.
For me, it involves a combination of quiet solo time whenever I need it, not forcing myself into situations when I’m not in the right headspace or energy level, and being honest with finding things I enjoy. That last one sounds simple, but believe me, it was quite a revelation to realise that I don’t like watching Netflix, and was just watching it to pass the time, but I do enjoy listening to audiobooks about the surrealist movement and learning Swahili on Duolingo instead. (Side note: a lot of this has to do with learning about neurodiversity and where I am on the spectrum, but that’s a post for another time).
Now, I get anxious, I get worried. But I don’t get stressed, and that’s how I keep my symptoms in check.
Even if I’m not currently ticcing, Tourettes is still there. On the outside, I look petty calm. But in my mind, I’m ticking away. I can hear every single vocalisation, and I still get tingles in my muscles where my body would before have manifested a movement. It’s still hard to concentrate fully.
That’s why I call Tourettes my constant companion, my invisible friend at 30 years old. It may be hidden, but it’s always there with me, like it or not. And even if you’re not aware of it, I’m still doing what I need to in order to continue doing the things I want. It’s just not something that I share with most people.
So… what do I want you to know?
A lot of the things I’ve learned have to do with realising exactly what’s in that gap between the actions of well-intentioned people, and what I need as an individual.
That’s the thing here too. I’m not speaking on behalf of experiences for everyone with an invisible disability. There’s a huge spectrum of conditions and ways they impact people. These are just my experiences, as an individual.
I’ve shared what I’ve learned, but if I had to phrase it directly? My friends know I’m not generally good at expressing my needs. In fact, you may have noticed reading this article that I’m pretty stubborn and introspective when it comes to getting help. But I’ll give this a go:
I need to not be told to lower my expectations. I can figure out if I need to change my plans on my own, and I’ll let you know how you can help me get there. I need you to know that my path there may be rather more wiggly whereas, for others, it’s straight and direct.
I need you to accept how I’m dealing with it. By all means, if you come across an article about how someone with Tourettes has found a way to improve their condition, I’d love to read it. If you have an idea about a way I can sleep more to have more energy during the day, tell me. But my treatment — especially where medication is concerned– is ultimately my decision, and I need you to respect that.
Finally, I need you to remember that you don’t know when someone has a condition. So many conditions are invisible and still have a huge impact on a person’s mood, energy, capacities and more. Of course, it’s not about assuming that everyone has an invisible disability, more just being empathetic and understanding that disability or not, we see the tip of the iceberg in others, and there’s a lot we don’t know.
Oh, and finally, please don’t compare me to a kettle. Humans are not kettles, and it’s not helpful.
If you want to learn more about Tourettes — I’m always happy to answer questions. I’m open and happy to share, no questions are silly.
If you want to know more about my constant companion, here are some answers already.
- It involved lots of swearing, in particular, f*ck in all its forms, including f*ckwit, f*cked, f*ck off, and very occasionally, the elusive f*ckityf*ckityf*ckf*ck. This kind of tic is called coprolalia.
- I would often say words I heard multiple times, which some people took as mocking, but it wasn’t conscious at all. It’s a phenomenon known as echolalia.
- My Tourettes seemed to go through phases with favourite words. For a good time, it was the word chip. Other times, it was made-up words. There was a period of swizzle, for example.
- I can vocally tic whole sentences. It’s pretty impressive. One of my favourite sentences–and I have absolutely idea why, is saying “Excuse me, I’m an orange.” For my 27th birthday, one of my best friends got me a teddy orange for this reason.
- Yes, I’ve shouted “bomb” in an airport. No, I did not get arrested, the staff realised instantly and kindly guided me through staff corridors so I’d have some privacy.
- No, no one was surprised when I came out as queer. Tourettes had prepared me for the moment by forcing me to come out hundreds of times daily completely against my will. And with hindsight, I find this darkly amusing (and thank my lucky stars that my family are not homophobic).
- I love language learning. And I tic in other languages. You should see the looks I used to get on the Berlin U-Bahn ticking away in Arabic.
- Yes, I’ve vocalised insults and pretty mean things. It’s hurt people’s feelings and I’ve felt terrible about it, but it’s not at all representative of a thought I had or anything conscious. If my Tourettes says “fat” around you, please know — I’ve called just about everyone else in the town I grew up in fat too. 💖
- Yes, I laugh at it, a lot. And my friends do. I say some random-ass sh*t. Did I mention that I’m an orange?
- I had a wide spectrum of motor tics, the main one which I have to this day is tapping my chest with my right hand balled up in a fist. I’d make the peace sign a lot.
- No, I never hit or hurt another person with a Tourette’s movement.
- Yes, the movements do hurt me sometimes.
- Writing about Tourettes or talking about Tourettes makes me tic like mad. You should see me right now. Swizzle.
I’ve already mentioned Tourettes Action if you’d like to learn more, and there’s more information about the condition from Tourettes Scotland if you’re interested.
(P.s. thanks for reading 💖)
