Despite what you may have heard, Tourette is not a disease. Tourette is a ‘syndrome’, and is often refereed to as ‘Tourette Syndrome’. Syndromes and diseases are different with their own unique definitions.
I have heard Tourette being called a disease. Sometimes a ‘swearing disease’, but that’s a myth for another day. Here we look at whether or not having Tourette means we have a disease.
I hope to clear up the difference here, for my sake too. It has taken me a while to get used to the different terms!
What is a disease?
Britannica.com provides the following definition:
any harmful deviation from the normal structural or functional state of an organism, generally associated with certain signs and symptoms and differing in nature from physical injury.https://www.britannica.com/science/disease
Okay, so I know it is a change in the body that is not due to physical injury. Got it.
It is a harmful deviation from normal structure and functioning of an organism. Got that too.
But couldn’t it be said that Tourette is a harmful deviation too? It is still confusing to me, so I need to look a little deeper.
What’s the difference between a disease and a syndrome?
Tourette has a longer, more interesting name. The full name is Gilles de la Tourette’s syndrome.
‘Gilles de la Tourette‘ is the neurologist that the condition is named after. ‘Syndrome‘ helps us understand what we are dealing with.
According to Merriam Webster, a syndrome is:
1: a group of signs and symptoms that occur together and characterize a particular abnormality or condition
2: a set of concurrent things (such as emotions or actions) that usually form an identifiable patternMerriam-Webster: syndrome definition
Okay so their first definition doesn’t help clear things up for me. I still struggle to understand how a disease differs from this.
The second definition helps me more. It seems here that it isn’t just bodily sensations, pains or reactions that define a syndrome. It can also be behaviours.
What I take from this is; a disease is a condition that affects the normal functioning of our bodies and minds. It is something we can point to and say- this isn’t normal and we need to fix it.
We know how it could have developed there. We know how the body should look without it and therefore the aim is to get it out of the body. Disease is only harmful with no positive effects.
I think of disease like ice on a road. We know how the road should look without ice. We know the dangers of ice on a road and the aim is now to remove the ice.
A syndrome is a collection of factors that we can identify, however may not have an identifiable cause.
Those with syndromes can live happy, healthy lives, and (in Tourette Syndrome at least) doesn’t reduce life expectancy on it’s own.
It is harder to pinpoint a syndrome. You can’t look into an MRI scanner and say ‘ah, that’s Tourette syndrome!‘ as nothing will show up. Instead, it takes longer to diagnose and is usually diagnosed through a persons behaviours.
I now think of a syndrome like a rocky road.
For a truck driver it doesn’t cause problems. For the delivery person riding a bike with a fresh pizza in their bag, it’s not so easy.
Each individual has a different experience– and with that- different strengths and weaknesses.
It is harder to distinguish where the road ends and the open land begins, similar to pointing out Tourette syndrome in a persons behaviours.
How did Tourette get labeled as a disease?
Tourette has long been known as a syndrome. It is only through ignorance or a lack of education on the topic that it is called a disease.
You will probably find that those calling it a disease do not work in the relevant fields, and probably don’t know much about Tourette in general.
This happens. There are many areas I am ignorant in, too.
It is just about being open to learn and make those changes that help to end the myths and misconceptions.
The media often portray Tourette syndrome as a ‘swearing disease’ due to the 10% of sufferers that have Coprolalia. The most extreme tics are often the ones that gain the most attention.
By oversimplifying a syndrome that varies so much person to person, it is no surprise that many people simply refer to it as a ‘disease’.
Is Tourette a disease? Final thoughts
I admit that it was hard for me to understand the difference between a disease and a syndrome, although I still have much to learn.
Blogging my findings however is helping me get there step by step.
Syndromes seem to be more infused with a persons personality and behaviours.
If we are able to help spread the word and raise awareness for Tourette Syndrome, hopefully there will be less of a misunderstanding. Less incorrect terms being used. More understanding of the hardships and difficulties this syndrome can bring.
I hope this post helped you, whether you are a sufferer, a family member or simply curious.