By Lucy Clapham
I have lived with Tourette syndrome (TS) 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 Tourette 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 an estimated 10 to 15 percent 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! Many of us get what is known as a premonitory sensation or urge that 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 can be 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 sometimes make it worse. So don’t ask us to suppress our tics!
3. It can be painful.
Although many tics are 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 breakneck speed. If I injure one of my joints, my TS will focus on the injured limb and I won’t stop twisting it.
4. Some people have tic “storms” or fits.
Some of my friends in the Tourette community and I suffer from what we call “tic fits” or “storms” where we completely lose control of our bodies to tics. This can be scary and painful for us, and I believe it’s a poorly researched part of TS by professionals.
5. Laughing is fine… sometimes.
While we do have a sense of humor, you really need to know when it’s OK 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 dropkicked a tortoise!” at random. If I am obviously not happy, don’t laugh! Always ask the individual with TS whether laughing is OK and when.
6. It often comes with “added extras.”
Many people don’t just have 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 math.
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 about 5 to 10 percent of people with TS continue to have symptoms as adults.
8. Some activities can calm tics.
Some of us find that our tics reduce or disappear completely when we are engaged in certain activities, such as 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 some do. For me, it’s playing the guitar.
9. Pointing out tics can make them worse.
I can promise you that we are aware we are making noise or doing a strange movement. Pointing this out not only causes more embarrassment, but, for me, can also make me feel more like I 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.
There is no cure at this moment. The only options for treatment include medications or, if the TS is severe, deep brain stimulation. Neither is a cure for TS but may reduce the severity of the symptoms. I don’t take medication for my TS because the side effects outweigh the benefits for me.