In July 2023, news channels started publishing articles stating Melanie Sykes- a British television presenter- was recently diagnosed with Tourette syndrome.
The problem is, Melanie Sykes took to Twitter to say this wasn’t the case.
Hello there. For the record I have NOT been 'diagnosed' with Tourettes.
— Melanie Sykes (@MsMelanieSykes) July 17, 2023
I self identify because of my studies and understanding of the pre existing 'conditions' that are hand in hand in some autistic people. Thanks to @KieranRose7 and his insight#truestory
So, what happened here?
It turns out, on the Alan Carr ‘Life’s a Beach‘ podcast, Melanie states that she does indeed, have Tourette syndrome.
'It's over a decade, for f**k's sake. Can you swear on this, sorry? Oh that's good, but I'll try not to because I've just discovered I have Tourette's really as well... I describe in the book when I laugh at really inappropriate things'
I can’t use this to confirm nor deny whether Melanie has Tourette syndrome. I’m not qualified to, I just have Tourette. A diagnosis has to come from a medical professional, learning about an individuals lived experience.
Melanie is the only one able to truly understand her own behaviours and symptoms, and reflect on these to better understand herself.
The concerns I have listening to the episode
Melanie states she has Tourette, before later Tweeting that she self identifies and isn’t diagnosed.
A big problem we have in society is a difficulty getting diagnosed.
Millions upon millions of people are struggling to get help for Tourette syndrome, despite having the condition. This is just as true in countries with the greatest access to healthcare.
Many people are heading to forums, self diagnosing and self-helping purely because it is the only thing to do.
Not having a diagnosis doesn't mean there should be a diagnosis
I will not deny Melanie’s lived experience. The problem with only partially opening up on a podcast is we only get to hear a small amount of information.
Many people with Tourette are unable to get diagnosed, but many people currently thinking they have Tourette will in fact have something different.
Let’s focus on the podcast segment, when Melanie states she has Tourette.
Laughing at really inappropriate things isn't usually a sign of Tourette
Laughing tics are tics many sufferers experience. An involuntary urge to let out a sound or action emulating a laugh, however this is usually done without any emotion behind it whatsoever. It’s like wearing a happy face mask with deep feelings of sadness, embarrassment or shame beneath it.
It isn’t like when our teacher fell over in class. Or when someone farts in a serious business meeting. Or just because we know laughing at a funeral is bad. A laughing tic is different.
We all laugh at inappropriate times. Whether that laugh is due to a vocal tic, or because we know we shouldn’t. There is a distinction however, and to describe that distinction to someone without Tourette, is very difficult.
This is why self diagnosing can sometimes lead us down the wrong path, and a professional diagnosis can make the distinction clearer.
If Melanie experiences a laughing tic, along with two motor tics, then Melanie could very well have Tourette syndrome.
Swearing remains a stereotype
Throughout my life, hearing people reduce Tourette to swearing has often helped me understand how much that person knows about Tourette.
Swearing tics are a thing. However, roughly only 10% of people with Tourette experience swearing tics.
Society would have you believe it is 100% of people.
It’s amazing how many people I have met that are convinced- after only knowing me for a few brief moments- that I don’t have Tourette. Simply because I am in the 90% of people that don’t have swearing tics.
When Melanie jokes about trying not to swear on the podcast, I cringe a little. Purely because it reminds me of the times Tourette is seen as a swearing disease, which is still far too often.
It sounds like someone without Tourette, joking about having Tourette without a deeper knowledge of the condition.
Melanie could have amazing knowledge of TS. The segment was just not enough to demonstrate that. And as someone that doesn’t seem to have a history of Coprolalia, it seemed like a cheap joke more than anything.
Please Melanie, get a diagnosis
For anyone wondering if they have Tourette, get a diagnosis if you can.
It will help clear things up for certain.
Specific behaviours could be caused by many things. Motor and vocal actions may not be tics. And not all tics are due to Tourette syndrome.
It is important to know that Tourette is a more severe form of tic disorder. Tic disorders are diagnosed depending on how many tics are present, and for how long.
There is already so much misinformation around Tourette syndrome, someone claiming they have Tourette for reasons that may not even be diagnostic criteria, can fuel stereotypes.
If this is Tourette syndrome, let’s give it more than a few lines in a podcast. Let’s give it a whole episode!