10 Things That People with Tourette Syndrome Really Want You To Know

I believe that, the more people understand about the medical issues that can make some appear “different” from the majority, the more understanding, and tolerant, that we as a society, might become, and that is why I write about such subjects in my blog.

I had a spell of very severe depression a few years ago and I spent several months in a psychiatric hospital as a result of that. During that time that I spent hospital, I met, and became friends with, people suffering with schizophrenia, bi-polar disorder, paranoia, and those who were suffering from the effects of addictions. I found that, when you look beyond the symptoms of their condition, you find, big surprise, there is a human being underneath.

So, to cut a long story short, I saw a homeless guy in London the other day who kept flicking his head back on his shoulders as he walked. What shocked me was not the fact that appeared to be homeless, or the fact that he appeared to me to have Tourette syndrome, it was the shameful number of people who were pointing and laughing at him that was so shocking.

This man may, or may not, have had Tourette syndrome, but it made me determined to find out more about this neurological condition and share it with you. Perhaps if those people in London had a better understanding of the condition, they wouldn’t have been laughing. We can but hope.

1. What is Tourette Syndrome?
Tourette syndrome (TS) is a neurological disorder that is characterised by tics, which are involuntary physical movements of the muscles, or vocalisations, such as shouting, or the use of inappropriate words. The tics can come and go, and they can be relatively minor, like repeatedly clearing the throat, or sniffing. In fact, people can have had Tourette syndrome, and have not even realised it.

2. How common is Tourette syndrome?
Tourette syndrome is more common than you had probably realised. About one in every one hundred children has Tourette’s, to one degree or another, and, although tics are more common in children and teens, it can stay with people through to adulthood.

3. The symptoms of Tourette syndrome vary considerably from person to person
The media, and YouTube, love to focus in the severe cases of verbal tics, where people shout out inappropriate words, but there is a huge range of different symptoms. They can be both simple tics and complex tics. Each case of Tourette’s is actually unique to that person and that can make very difficult for institutions like schools to deal with.

4. It has no reflection on mental ability
The tics are no reflection at all on a person’s intelligence and it should have no bearing on how well a child could do at school. It does, however, take a huge amount of effort to control the tics, so if a child is focusing hard on holding a tic back, they may find it hard to concentrate on their school work. Children with TS may also experience problems with their reading and their handwriting, because of the effect of the tics.

5. It is more than just a habit
It struck me as I was researching this, how many parents must have said to their children ‘stop pulling that face’, or ‘stop tapping your feet’. Tics are completely involuntary and people with Tourette’s simply cannot stop them from happening. It’s been described as being like knowing that you are going to sneeze; you can feel it coming, you can hold off for so long, but then it just has to come out.

6. Tourette’s waxes and wanes
 The tics that Tourette’s syndrome patients experience can come and go, but there is no way of identifying why. It is known, though, that stress or excitement can bring on tics, or make them more pronounced. Just because a child’s symptoms stop for a while, that does not mean that they were only pretending before, and it doesn’t mean that the tics won’t come back again.

7. The disorder is not a swearing disease
People with Tourette’s are often stigmatised by the press and the media as being ‘those people that swear a lot’. The uncontrollable swearing is only exhibited by around ten to fifteen percent of people with the disorder. 

8. TS Often goes hand in hand with OCD and ADD
Many people, though not all, who have TS also have Attention Deficit Disorder (ADD) and or Obsessive Compulsive Disorder (OCD). This combination of conditions can make life very difficult for children in particular, and most people who have TS say that, given the choice of the two, it is the OCD that they would rather not have.

9. People with TS are not attention seekers
You can’t tell someone to stop their tics, because the tics are completely involuntary. Some adults learn to control their tics until they are in private, but they are holding the tics back, not stopping them altogether. Children who have TS are certainly not seeking attention, quite the opposite; they would probably do anything to stop people looking at them.

10 People who have Tourette’s syndrome are no different from anyone else
If there is one thing that I got from the research I did for this article that made me realise more what Tourette’s is about, it is the idea that it’s like a sneeze. We all sneeze, we all sneeze uncontrollably sometimes, and it’s not something that we can stop from happening. Other than the tics, a person with TS is no different from you, or from me.

Of course, I cannot truly know what it must be like to have to live with Tourette’s syndrome; any more than a person who has never experienced real depression know what it’s like to be depressed. If I have made any glaring omissions or errors in this brief description of TS, then please do let me know in the comments. The more that we talk about such conditions, the more we will all understand, and be able to relate to, the people who have to live with them.

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