Last weekend, I had the wonderful pleasure of meeting and working with Serena Bhandari. We collaborated on two fronts; firstly a bright & daydreamy photoshoot in China Town with a literal sweet concept, where Serena wore her previously-purchased bespoke ARIEL top & the CIRROSTRATUS princess dress of dreams.
The second collaboration was an interview, all about Tourette's Syndrome.
Serena is already a noted advocate to this cause, having been featured & written for many notable publications, the Guardian for example. In this interview, we hope to raise even more awareness about Tourette's Syndrome and to dispel stigmas.
Thank you so much to Serena for sharing her experiences.
1. Do you tic in your sleep, and therefore in your dreams?
I'm not actually sure if I tic in my sleep - but I'm pretty sure I don't. And I've never noticed myself ticcing in dreams but that could just be because a lot of other, weirder stuff is going on around me.
2. What do you think is the biggest misconception about Tourette’s? How do you think we could reverse this misconception?
There are a lot out there but I'd say the biggest misconception is definitely that all people with Tourette's swear or shout rude things. The actual number is so much lower (around 10%) but because it's considered an interesting aspect of the condition to portray in documentaries and films it's all people ever see unless you know someone with TS. Really I think that we need more representation in media and other visible public roles - so when people think Tourette's they have a more varied picture of what it involves.
3. How old were you when you found out you had Tourette’s, and how did you find out?
I was 8 or 9 and I suddenly began squeaking and I couldn't help it. I'd had little tics and fidgets before, but the kind that kids might just have in general - but when the squeaks started it was obvious that actually there was something more to it. I saw a bunch of doctors and got a diagnosis shortly afterwards. I think I'm very lucky that my parents found supportive doctors and in all honesty that they even had an inkling of where to start as I've heard horror stories about people waiting years for diagnosis.
4. In your experience, what’s the biggest challenge about living with Tourette’s?
There are a lot of everyday challenges having Tourette's, thinking about situations you might be in, or triggers to avoid and I think they can really build up - but they're mostly under the surface and invisible if you don't know the inner workings of my mind. So I think that's really one of the hardest bits, navigating life when I have different access requirements but to anyone else it looks like I'm just being picky or fussy. I find it hard to explain why I need to sit in a certain seat, or why I can't travel to certain places. That's definitely one of the biggest challenges I personally have.
5. In your experience, what’s the best thing about living with Tourette’s?
I think it's given me a healthy dose of empathy because I know what it's like to be different or have a tough time mentally. TS is intrinsically tied in with my sense of self at this point and I don't know who I'd be without it.
6. If you were to share a piece of advice with a young person who had just been diagnosed ~ what would that be?
Don't be in denial for a decade like I was, come to terms with your Tourette's and learn to talk about it and advocate for yourself - or don't talk about it, but find a way to accept it internally (because you don't actually owe anyone explanations that you don't feel comfortable giving).
7. Have your tics changed over time, and is this connected to what was going on in your life at the time, or is it disconnected?
Tics always change! I have different tics now than I did when I was first diagnosed and they've changed a lot in between. I still have my squeaking tic though and a couple of others from back then. I'm not sure if any of them are connected to life situations, though stress definitely makes them worse so there's that.
8. What can someone without Tourette’s do to help/support in order to raise awareness and alter the stigma?
Honestly just learn about TS and don't be the person spreading stereotypes or telling nasty jokes! If you know someone with Tourette's and you're close enough to them that you think they'd be comfortable with it, ask them if there's anything they'd like you to understand or anything you can do that would help make life more manageable when you're around.
9. When did you decide to become a Tourette’s advocate?
I've been doing bits and pieces on and off since I was 16 or 17, but it was only in this past year that I just thought "I need to get this stuff off my chest", so I started posting educational stuff to my Instagram! I think a big part of it was looking on the internet and finding that there was a big gap when it came to young adults talking about their Tourette's openly as a part of their lives and acknowledging that TS doesn't just stop when you reach adulthood. I wanted to see people in my age group or stage of life existing and living their best lives with TS and when I didn't find so much of it I decided to try being that myself.
10. Please share some resources you stand behind, for Delta Of Phoenix subscribers to read, research & learn more!
So cheeky bit of self promo out of the way first - my Instagram is @saibhandari and I post relatively frequently about my experience with Tourette's as well as more general stuff. I'd also absolutely recommend checking out the Touretteshero site - I do a monthly blog feature there but there's so much other great content from the Touretteshero team. Caspar Lee has made a few interesting videos about his experience with Tourette's too. Apart from that I think just going on Tiktok or Instagram you'll find people making great content about their TS, and obviously going to the Tourette's Action charity website you'll find decent educational resources.