I have lived with Tourette Syndrome for most of my life, but I was only diagnosed when I was 17. Technically I was told when I was 15 but I laughed it off due to my own ignorance about the condition. So for the benefit of those who are facing a TS diagnosis themselves or are just interested let me tell you some lesser known things about TS.
1. There is more to Tourettes than swearing
I cannot stress this enough. Although coprolalia; the fancy word for involuntary swearing, can be a symptom, it is surprisingly rarer than the majority of television shows would have you believe. Only 10% of people with Tourette syndrome swear involuntarily, me being one of them.
2. We can’t ‘just stop it’
If only it was that easy! Yes, I know it’s an annoying noise and this really isn’t the best place to be making said noise, but I literally cannot stop! Most of us get what is known as a premenitory urge which can feel like an itch inside the body or a small jolt of electricity. Some of us can, and do learn to suppress our tics, but it is really hard for us to do this. To help you understand, try not to blink. That horrid feeling that builds up in the back of your eyes; that’s what we get all over our bodies! Just as you will need to blink, we will eventually need to tic and it can make it worse. So don’t ask us to suppress our tics!
3. It can be painful
Although tics are mostly harmless, some can cause either minor or severe pain. This can be due to repetitive movements, punching or kicking things, biting and scratching ourselves and in my case, even running myself into walls at break neck speed. If I injure one of my joints, my TS will focus on the injured limb and won’t stop twisting it!
4. Tic ‘storms’ or fits
A little researched phenomena in TS is tic ‘fits’ or ‘storms’. This is where the person with TS completely loses control over their body and cannot stop ticcing all over. In some cases this can even require medical intervention, especially if breathing is impaired.
5. Laughing is fine… sometimes
While we do have a sense of humour, you really need to know when it’s okay to laugh and when it isn’t. Generally speaking my rule is ‘if I’m laughing, you may laugh too’. It is extremely difficult not to laugh when I’ve shouted ‘DONKEY KONG DROP KICKED A TORTOISE!’ at random. If I am obviously not happy, don’t laugh! Always ask the individual with TS whether laughing is okay and when.
6. It often comes with ‘added extras’
Very few people have just TS. Quite a lot of us also have Obsessive Compulsive Disorder, Attention Deficit Hyperactivity Disorder, Autistic Spectrum disorder and various other issues, often to do with learning. I couldn’t write until I was 12 years old, others may struggle with reading or maths.
7. Some of us don’t grow out of it
Although a lot of doctors say that most people grow out of TS at around 18 years old, this isn’t always the case and quite a few of us adults have the condition. Some even develop their first symptoms in adulthood although the reason for this is still not understood.
8. Some activities can calm our tics
Although the reason is not known, quite a few of us find that our tics reduce or dissappear completely when we are engaged in certain activities. For some this may be playing a musical instrument, jogging or other forms of exercise, playing computer games or spending time with an animal. Everyone is different in this respect and I expect some of us don’t have a special activity, but many of us do. For me it’s playing the guitar.
9. Pointing out our tics makes them worse
I can promise you that we are aware that we are making noise or doing a strange movement. Pointing this out to us not only causes more embarrassment, but can also make us feel more like we need to do the tic. My Dad once thought it would be helpful to point out that I was squeaking, but instead of stopping it, I could no longer control it!
10. There is no cure
Unfortunately there is no cure at this moment. The only options for treatment include extremely mind-numbing medications or if the TS is severe or life-threatening, Deep Brain Surgery (DBS). Neither is a cure for TS but may reduce the severity of the symptoms. I don’t take medication for my TS as the side-effects outweigh the benefits.