In November 2020, my life took a very big turn. From there, things seemed to spiral slightly out of control and come February 2021, my life had completely turned upside down. Since then, I’ve been trying to write a blog to explain everything that’s happened, but I’ve never quite been able to put it into words. Don’t get me wrong, I tried to write so many times. I’ve opened document after document, stared at a blank page for hours at a time. I’ve never been able to make it past the first draft. Until now.
Where to start? Maybe with an introduction? Hi, my name is Emily – although I think most of you know that. I’m twenty-one years old, I work as an administrator and cashier at my local garden centre. Lately my life has changed dramatically, and here’s the story of how it all happened.
Hold onto your hats tightly, we’re whizzing back in time to where I left you all, in November of 2020. I posted my last blog on the 23rd November 2020, and four days later the love of my life, C, asked me to marry him. I said yes, and we’ve been happily engaged for almost two years (No, this isn’t a breakup story). He makes me the happiest I have ever been, and getting engaged was literally one of the best things to happen in my life, however I didn’t know that from there my life was going to spiral.
There was a huge, dark cloud hanging over my life. It had been following me around for years, and I’d been trying so hard to ignore it, however in December of 2020 it finally caught up to me.
And boy, did that storm crash down hard. It started with a single video online, something that I would normally not be bothered about, but I’d had some thoughts swirling around in my brain for a few weeks and watching that video solidified these thoughts into something big. And then suddenly all I could think about was that big something. It seemed to consume me from within. I was terrified and I had no idea why this thought was haunting me. I didn’t even know what it was, all I knew was that I couldn’t cope with it.
From there, more thoughts popped up, some completely irrational and impossible. What would happen if I left on that light switch? If you leave work even a minute too late, you’ll get into a crash on the way home. If you don’t do that someone will get hurt. If you don’t pray each night for your family to be safe, everyone is going to die and it will be all your fault. I didn’t know it at the time, but these were a pretty shitty case of intrusive thoughts.
Intrusive thought: “Intrusive thoughts are unwanted thoughts that can pop into our heads without warning, at any time. They’re often repetitive – with the same kind of thought cropping up again and again – and they can be disturbing or even distressing.” (iesohealth.com)
Disturbing and distressing is definitely the right way to describe them. I couldn’t eat, couldn’t sleep. I couldn’t do anything except sit in a paralysed fear when they hit. I was not myself, and it didn’t take very long for the people around me to figure it out. I was too embarrassed to tell them, so I kept them inside, let them eat me up, until I was so lost within the thoughts one night that I couldn’t take it anymore.
The first person I told was my mum, and it was like a weight had lifted from my shoulder. I let all the fear out, managed to dissolve the thought, and get some sleep. This wasn’t the end of them, though. It took me months to get them under control, to realise what was an ordinary thought and what was an intrusive one. I worked through the stupid intrusive thoughts, asked people for answers that would squish them. I made myself leave work a few minutes late, I didn’t look at the light switch when I went up to bed, I made myself think of what had happened in my day rather than pray frantically to something/someone I’m not even sure exists.
I learned to tell the thoughts to fuck off, when I heard them whispering to me.
Unfortunately, sometimes I got so lost within my own head, that I couldn’t (and still can’t) filter out the thoughts. I couldn’t do anything other than shake my head to try and get them out; grip tighter onto C’s hand. Sometimes they’d ruin my day, but they’re better now. Not as persistent.
This wasn’t the end of my problems.
In January 2021, I started to notice that I was developing tics. Tic are defined as a habitual spasmodic contraction of the muscles, most often in the face (oxford dictionary). These weren’t unusual for me, I’ve always noticed little twitches that I do, like a jerk of my neck or a tap of my finger, or even a funny blink. What I didn’t realise was that most people didn’t feel like their necks were tensing up, and something was building in their chest, when they knew they needed to tic but held it in.
I left it be, thinking nothing of it at the time, before I started to develop something that’s called a verbal tic. This is described as, simply, a sound that someone makes with their voice. Mine was a short, sharp whistle. Once I started this little whistle, things began to get a little out of control.
In March 2021, I told one of my managers that I thought I had Tourettes syndrome. Telling them was one of the scariest things I’ve ever done in my life, and I decided to because the night before I’d gone out for a walk and I’d just erupted.
Tourettes syndrome: Tourette’s syndrome is a condition that causes a person to make involuntary sounds and movements call tics. It usually starts during childhood, but the tics and other symptoms usually improve after several years and sometimes go away completely. (nhs.uk)
Now I know that you’re thinking, Emily, you’re not a child. You’ve never shows signs of having tics or Tourettes. This must have been what my manager was thinking at the time, because they asked me something along the line of “are you sure you’re not making it up?”. Naturally, I did not react well to the response. I managed to hold my composure and went to start my work day before I burst into tears at the reality of ‘No one is ever going to believe me’ and ‘what if I am making all of this up’. They didn’t know they’d upset me (and I know they’re reading this now and I don’t want them to feel bad about it, because they knew about as much as I did about Tourettes at the time – they have since supported me and have helped other people accept and understand that I have this disability). I just couldn’t help thinking that if this manager who has known me for over a couple years didn’t believe me, then who the hell would?
The day I told manager was my last day at work for three weeks. I signed myself off as sick for a week and went straight to the doctor. They then signed me off for two more weeks, told me not to work or drive and to just chill out before referring me to a specialist.
I had to have multiple blood tests, to check the tics weren’t due to an infection and to check I was healthy, and then I had to have and MRI (aka. The weirdest medical machine I’ve come across), to check I didn’t have a tumour. I got the all clear and a few months later – in July 2021 – I got a clinical diagnosis of Tourettes syndrome. This doctor referred me to a specialist unit, so I could seek out help with how to deal with my condition and to see if there was any medicines that could be prescribed to control my tics, however the referral got rejected a few months ago and I haven’t chased up my doctor’s surgery because I am coping okay with it all now.
I’ve had Tourettes syndrome for over a year now, and a lot of my violent tics have managed to fizzle out or become somewhat controllable. In fact, if you were to meet me in person, you probably wouldn’t even notice. My most common tics are neck twitched, sniffs, coughs and little whistles. I also occasionally swear (no, not everyone with Tourettes has swearing tics) and flip people off when I’m stressed. I also click out my jaw a lot and scrunch up my face when I do certain sniff tics. There are also verbal talking tics I get, where I can stream entire sentences of bullshit, ask people questions without any punchline – e.g. did you know? – and say silly little words like ‘cucumber’ (a favourite at the moment), ‘biscuits’ and a very tuneful ‘fuck off’ that sounds nothing like my normal voice.
Maybe if you were playing very close attention to me, you’d pick up on them. But, chances are, if you’re more focused on trying to see my tics then talking to me there’s a high probability that I don’t want to be talking to you, and will be suppressing them.
I accepted that Tourettes was a part of me, almost fully (sometimes I still struggle with it) in probably March this year – 2022. It’s taken me a very long time to understand that this is a part of my life now, and I’ve so proud of myself for adapting and finally accepting that this is who I am.
Alongside Tourettes, people can suffer with ADHD, OCD and anxiety. While I think anxiety is a part of most people’s lives now, and that most people probably have it, I know that OCD is not. Unfortunately, this is something I’ve been burdened with. Over the last few weeks, I’ve been focusing down on my OCD and the ways it’s impacting my life. I’m awaiting CBT therapy and a specialist to help me deal with it, however I seem to be on a very long waiting list.
I don’t experience what people would call ‘normal OCD’. I’m not obsessed with cleaning, and I don’t have bad little nags in my brain about smelling food a certain amount of times before I can eat it. I just do certain things because if I don’t, it doesn’t feel right. Up until a couple of weeks ago (literally) I thought I was an idiot, weirdo, completely insane. The whole reason I was put on a waiting list for CBT therapy was because the person I had spoken to about needing help originally had no clue why I was doing the things I was. He just didn’t understand my OCD, and I think that helped alienate myself from who I was a little more. Not only was I dealing with all these intrusive thoughts and Tourettes, I was now having to deal with OCD that a medical examiner did not understand.
Not all was lost. After finding resources for help with my Tourettes I stumbled across a video of someone with the same disability where they explained that alongside Tourettes they also had Tourettic OCD. Being naturally curious, I decided to google it and OMG! IT EXPLAINED EXACTLY WHAT I HAD!! I WAS NO LONGER A WEIRDO!! Tourettic OCD, is described mostly as tic-related OCD. This is when you do certain actions, like touching, a set amount of times for it to feel ‘right’.
Tourettic OCD: “In brief, tic-related OCD, in contrast to non-tic related OCD, is characterized by an earlier age of onset, an overrepresentation in males, symptomatology that tends to include touching, tapping and rubbing, a higher percentage of violent and aggressive intrusive thoughts and images, and concerns about symmetry and exactness. This contrasts with non-tic related OCD which is characterized by onset after puberty, equal gender representation, contamination concerns and cleaning compulsion.” (behaviortherapycenter.com)
I first remember my OCD starting out when I was a child. I had a certain bedtime routine, things I had to do like touch a little trinket I had hanging next to my bed. If I didn’t touch it in the correct way, I have to do it again, and if that time it felt wrong, I then had to do it again. However, because I’d touched it three times, I then had to touch it again, because I had to do everything in twos. Can you see the cycle I got stuck in? I also got stuck in this cycle with how crunchy leaves were when I trod on them, and sometimes was even down to the breaths I took, how strong they were or the length of them.
While I have some semblance of control over my OCD now, I still carry it out – even when I’m aware of it. My OCD manifests now as touching a certain item, say an item of clothing in the shop. If I touch it with one hand, then I have to touch it exactly the same way with the other one. Or if I rub a certain part of my car (yes, I can now legally drive!) on the indicator, I then have to do it again for the exact same amount of time. My car volume has to be on an odd number, and I can only turn it up or down by two so that it stays on an odd number. I eat chips, crisps, grapes and small items in twos, but if they’re bigger items, like cookies or those mini party pizzas, I eat either one or eat them in odd numbers (like three, or five).
Sometimes I feel like my brain hates me, like I’m going insane because of all the things I have to do in order to feel ‘right’ and ‘equal’ and now that I’ve found out that it’s an actual type of OCD, it’s made me feel a lot better. I’m slowly learning to live with all my little quirks, and I feel a lot more like myself because of it.
On the subject of feeling more myself, I’ve been trying to dedicate the last year to finding out who I want to be not only career wise but also as a person. I’ve been asking myself What do I want from life? And I’ve been surprised to find that I actually have an answer. Emerging from a pandemic that will go down in history, I felt lost. I wasn’t ready to go back out into the world and not have the security of being able to hide behind a mask. However, I also knew that I had to push myself. So I did and I’ve been better because of it.
I’ve pushed myself to do things I’ve always wanted to do, and have also pushed myself to do things I never thought I would. I went out and got three tattoos – one that I had been planning for years and two others which were kind of spontaneous but were definitely the right choice to make. I’ve started up working out with a personal trainer to gain muscle and weight so that I can love my body and get in tune with how it works. I pushed myself to go back out driving (after I got the all clear from my doctor) and managed to pass my test first go after a few months back on the road. I’ve officially been able to legally drive for six months! I’m absolutely terrified of driving, but I also kind of like it in a way – I like the freedom it brings and the possibilities it presents me with. I got a promotion, and now work on my own away from the public’s prying eyes. I’m thinking about going back into education and getting a degree with the open university (I haven’t actually told anyone expect my close family this, and it feels so great to get out there). I’m writing again, I’m reading again.
Despite all the shit that’s happened to me, there’s also been so much good.
And do you want to know the best part of all of this? I am finally happy. I never thought that was something that would happen to me. I didn’t think I was allowed to be happy. I never thought I’d be sat where I am now, next to my fiancé, writing a blog in my PJs on our bed.
There will always be bad days, and I do still have quite a few of them, but I’m slowly learning that the good days outweigh the bad. There is always a thread of happiness in with the sadness. Nothing is going to be bad forever, there is just bad and good and life is shoved somewhere in the middle.
In November 2020, my life got turned upside down, but I’m starting to think that maybe it was for the better. I took a year and a bit off, and now I’m finally back with so many new ideas.
Have you been wondering what I’ve been getting up to over my time off? You can check out my Instagram by clicking here: @emilybrownauthor . You can check out my lately reads, my crochet projects and everything else in my life!
Want to know where to wait for my next blog post? You can either wait for the link on my Instagram or find the links directly attached to my future Facebook posts here: @emilybrownauthor
Interested in anything else I have to offer? You can find my books for sale as eBooks on Amazon here: The Dimensions series.