My name is Beki, I am 43. 

My story really begins around 10 years ago, although what I knew as a child is very different from what I know now, so in many ways my story is a little backwards.

The first symptom I was aware of was pain. Even as a qualified personal trainer, with a good understanding of the body, I was still living with pain in my neck, head, and shoulders. Nothing relieved it: massage, stretching, relaxation, exercise. It just gradually got worse and worse. In the lead-up to my breakdown in late 2020, my stress levels and anxiety were through the roof. I had noticed small head movements that I couldn’t control. As the weeks went on, it became a full head swing – I felt like I was shaking my head at everyone, as if saying no. I couldn’t control it, and if I did manage to hold it in, it was worse when I let it out.

I asked the doctor about it because it was embarrassing, it was increasing my anxiety, and I was in so much pain through my neck and face. She looked up at me, paused for a moment, then went back to typing notes and never said anything about it at all. This happened so many times that I stopped mentioning it, because I assumed I was obviously being stupid, it was nothing, and I was wasting their time.

The next problem came when the pain in my neck extended into my head – the pain was excruciating and debilitating, eventually landing me in A&E. I collapsed in the toilets from the strength of the painkillers they gave me while I waited. I left with codeine in different doses that I could adjust depending on the time of day or night, and a referral to neurology.

Head scans showed nothing, and neurology gave me neck stretches and discharged me.

Using my knowledge of the body from my work, along with extensive research, I spent a lot of time looking through medical books and developing specific stretches to release the right muscles and strengthen others. This got me through that period, but only to a more manageable level.

Around 2023, I realised that I probably had ADHD, and the more I looked into it, the more I realised my daughter did as well. My initial conversations with school didn’t get us anywhere, and her struggles were starting to increase. By 2024, with the lack of support at school, I reached out to T.I.C.

We were invited to a group so they could observe Elise as she played with other children.

I found myself surrounded by people I didn’t know… but I couldn’t help noticing: that person moves their head like me. That person moves her face like me. I do that! My God, all these people move like I do. But I don’t have Tourette’s… do I?

I emailed them the next day to ask, “I know the session wasn’t about me, but did you notice anything?”

The response was, “Well, seeing as you mention it…”

The next time I went to the doctor, armed with the information that I might have tics or Tourette’s, and with a supporting letter from T.I.C., I was once again referred to neurology.

While preparing evidence, I asked my partner of 16 years whether he had noticed these things before. His response was, “You have always done them.” I was gobsmacked, because I didn’t even know. We went down a symptom list, and every one I read out was met with, “Yes!”

I was diagnosed with Tourette’s in 2024. I was pleased when I entered the neurologist’s office and saw that she had my notes on the screen from my headaches. As if in preparation, I had had a terrible week and was so anxious that I would be fobbed off, but it sent my tics off the scale. She wouldn’t medicate the tics, but I begged, “Please, I just need help with the pain!” Finally, just like that, I was listened to.

In early 2025, I received my ADHD diagnosis as well.

The thing I have found hardest throughout all of this? I have accepted ADHD, and I probably have autism as well, but I still have imposter syndrome around my Tourette’s.

T.I.C. has been an amazing support, reassuring me that I do have TS and that I am living it. I have also spent time talking to other people I have met through the groups, which has helped me understand what tics are, and what they are not.

Interestingly, one of the strongest connections I had with my dad was that we would bounce off each other, spouting lines from Monty Python, Blackadder, SpongeBob, or The Simpsons. We shared a sense of humour that I now understand was very connected to TS, and we were triggering each other. My dad died from pancreatic cancer in 2024, before I knew anything about TS. Knowing what I know now, my dad was clearly autistic and had severe ADHD, but he died never knowing about TS, and so I never got to talk to him about it.

One of the things I really miss about him is that connection we had, because now my TS doesn’t bounce back at me, and my quotes fall silent around people who don’t even know where they are from.

Until, of course, my daughter’s tics started showing more. She was diagnosed with TS earlier this year, and we have all seen a surge in her tics, as well as her relaxing and allowing herself to tic. Even school is getting to grips with managing it.

I love that I share this bond with her, and that we can laugh about it. I am truly myself around her, and when no one else is about, we have some really silly moments.

I also have the support of my mum, who has tics, and we realise my grandma did too, so it runs deep in the family.

Most of our family have been diagnosed with ADHD or ASD, and with older generations, we can now see why they were the way they were.

My diagnosis has allowed me to be myself and feel less afraid or embarrassed to tic in public, especially when I have my T.I.C. ID badge on display. This, in turn, has helped me manage my pain better, with the pain in my head now coming maybe once a month. At that point, I take what painkillers I can and head to bed until it eases.

A major step in my journey was auditioning for Alice in Neuroland, put on by T.I.C., “for a laugh”. Well, they only went and cast me as Ticcy Tabby, one of the daftest characters, alongside my daughter as Alice! But this truly was an amazing experience. Acting as a cat allowed me to wander around and do silly things. Although it was technically a mask, and I could do this in front of the audience because I was the “Cat”, that was the most public my true personality has ever been. Admittedly, I’ve gone back into my shell a bit, but it taught me a lot, and we had an amazing time acting together.

Thanks to T.I.C., I understand myself better than ever, and the process has helped me change my mindset from “getting better” to “get through today”. This has lifted the pressure, and I am slowly regaining control over my life. I just need to work on resting before I hit burnout!

And then there is the wealth of knowledge from the T.I.C. staff, as well as the T.I.C. families, who are a massive support network for each other. I have found my people, and they mean the world to me and my family. Thanks for everything!