Updated: Jul 3
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My name is Tiana, but I am also known as Robyn, I got diagnosed with Tourette’s syndrome in April of 2021, my experience with tics was very sudden and unexpected, I have always had small tics my whole life from what I can remember, things like heavy blinking and neck jolts but these were so small that they went unnoticed, why would they not?
In September of 2020 on my first week back to school I quickly developed more tics, more neck jolting and clapping and facial grimacing, but then they developed into vocals very quickly, we had no idea why this had happened and why it had happened so fast, so we rang up the GP and they told us it was anxiety and the stress of school after lockdown, which I believed because that made sense. The tics only got worse, more self injury tics, and I was sent to the support classroom at school where the SENCO there offered me a place for when my tics got bad and it was hard to concentrate so that’s what I did. Since anxiety made my tics noticeable worse, it changed to some lessons I just went to Raise because they were too big, stressful or other reasons and It felt reassuring that I had this support now, since I have struggled with anxiety for as long as I can remember.
Around Christmas time my tics seemed to had calmed down a lot, and we believed they had gone completely after months of anxiety work in counselling, but then the second lockdown came around after Christmas and they quickly came back, we decided it was best for me to go to school to work In the SEN bubble, so I could do my work and not be bored locked in my house all day unaccompanied, it was a small bubble of a few older children and a few younger children and the SENCO and many Access Leaders, and it was small so everyone quickly made friends, but this is where my tics got worse and I developed coprolalia in around early February which was very distressing, this is also when the self injury tics got worse, my hands would get stuck pulling my hair, I’d violently scratch my face until it bled and punch my head until I bruised, this was exhausting, and having another student who had recently developed tics too, obviously made us set each other off. At the time I didn’t know how to handle it, I knew that holding my hands down made it worse but the only solution we could think of was to make me hold balls of wool, teddy’s And soft things to stop me from injuring myself. Daily trips to medical for bandages and paracetamol became very common and this was when we finally got seen in person by a GP, where she referred my to the neurologist in Wolverhampton.
By the time the lockdown had lifted my tics where a lot worse than in September, people knew I had them but didn’t know they were this severe so I had a one to one every lesson which I was so grateful for because it really made a huge difference, some people found it hard to accept and others just got it, obviously I got accused of faking by some but that’s bound to happen, I had to take a pillow with me everywhere for fist and head banging tics so I was pretty padded up. In April 2021 I got diagnosed with Tourette’s Syndrome since my tics were so severe and constant I also have ADHD, but in May I developed an odd tic where I would get stuck, it’s like the tics built up and wouldn’t come out and just made my body stuck but I could hear and reply and everything, then I started to get what I thought were “tics” every time I felt vulnerable or anxious my body would shut down, I couldn’t hear, respond, my eyes would roll, I just looked like I was zoning out, this started happening a lot and my memory began to worsen, I would be confused and not be able to remember things from even the morning of that day, sometimes the whole week would just be a blur. Sometimes I would fall, sometimes I would just freeze, I had recently developed leg buckling tics so falling was quite common at this time and walking sometimes was a challenge.
Then, In early June an ambulance had to be called, since I had an ongoing tic attack for about an hour, the paramedics where quite clueless they didn’t really know what was going on or have any empathy for the pain I was in, I’m pretty sure they didn’t believe me. I went to A&E and they ran every test to make sure, nothing was wrong it was just a tic attack. My mum rang the doctors the day after to update them and ask about these weird tics I was having which were confirmed to be absent seizures, and I have I condition called NEAD (non epileptic attack disorder) or PNES which is when I would have absents when I had an anxiety increase.
I have filmed a few videos for the teachers and students to educate them on Tourette’s, since some of the students can be very nasty, I find it challenging to go out in public since everyone knows who i am and sometimes I’ll get shouted at, whistled at, things thrown at me. I find it terrifying to go out because I just don’t know when it’s going to happen again, and if it triggers a seizure I have no idea what will happen to me. I want people to know that people with Tourette’s or any other disability are human too, and we don’t deserve to be treated less than that, it happened to me, I was a very quiet student and now everyone at school knows me, it could happen to you, it could happen to anyone, so all I want is for people to be kind and imagine how it feels for me and other people with tics, being treated like this for something we can’t control.
I have recently been referred to Great Ormond’s Street Hospital where I will be getting the help and support I need and I am so grateful for everyone that’s helped me on my journey, my family, especially my mum who has had to take me to multiple appointments, my friends, especially those who catch me during my seizures, my Access leaders for pushing me in my wheelchair and helping me walk, my SENCO for arranging all my support and arranging my meetings and for always making time for me, and my teachers for still letting me be a part of their classroom despite the distractions I caused. I am so grateful for everyone that’s been a part of my journey