Since it is Tourette’s Awareness month, I thought I would share my story with all of you so you can glimpse what it is like to live with TS each day. Even though I want to raise awareness for Tourette’s as a whole, please note that this is my story. Every person you meet with Tourette’s is going to have a different story because tics and other comorbids (other disorders a person may have such as OCD or ADHD) that go with it are different in each individual TS person.
What is Tourette’s?
Tourette’s Syndrome (or TS) is a neurological disorder that causes physical movement and vocal sounds that are uncontrollable by the person experiencing them; also called tics. To have a diagnosis of TS, a person must have both physical and vocal tics for over a year.
Tics take on various forms. I have about 14 different types of tics on any given day. However, I don’t do all the tics at once, but I will do several at the same time. Some are less severe than others or less often. My main physical tics are a shoulder shrug, a twist motion, and tugging at clothes. I tic everyday, some days less often, some days so much it will physically hurt or keep me up for hours after trying to sleep.
My back history.
My tics started at 8 years old. I remember sitting in computer typing class working on the home row typing when I felt the urge to jerk my body to the side. At first I thought it was the way my clothes fit so I also started tugging on them. I felt this movement again and then again. Over and over it happened for the rest of class. I realized 2 things right then and there: this was something I couldn’t control and this was different than other kids. At 8 years old I knew I was different. I learned very quickly to suppress or hide my tics. But if you’ve ever tried to suppress an itch, you know eventually you have to scratch it. This is the same with TS. I could suppress for a while but eventually I had to tic. For me, different tics have different sensations. Some feel like I’m being yanked from the inside, others are more like a pressure building up that needs to be released, like a sneeze. I got good at hiding my tics and making it seem as if I was doing other things like cracking my neck, stretching, or had silent hiccups. Luckily, I really do silent hiccup so this one was easy to pull off.
I got so good at hiding or suppressing my tics, no one – not even close family – knew I had it. I was not even diagnosed until I was in my 30’s. During my pregnancies, my tics subsided but after they would get worse. After my 3rd daughter, they are the worst they have ever been. Luckily, after much trial and error, my doctor and I found a medicine that works enough to help but not enough to get rid of them. The only side effect is sleepiness so I do have to be careful when I take it, but it is much better than most of the other med’s side effects I experienced. Most people still don’t know I have it unless I say something. However, my husband and kids are aware. My husband especially can tell when I am ticking (he still gets a bit nervous if I am driving the car).
Here are a few facts about Tourette’s:
Tourette’s is painful.
I have a headache. Every. Single. Day. I have to take something for my headache every single day. Yes, I am well aware that this is ruining my kidneys or liver. But in the moment, I just want a bit of relief from the constant pounding. Most days I can still function, but there are days where I am grateful for my husband. He lets me rest and takes on all responsibilities while I do rest.
I also get muscle spasms in my back and shoulders. This takes extra time to heal just because I am constantly ticking so I make it worse each time. It’s like if I bruised my arm and continued to hit where the bruise was.
Not everyone with TS cusses.
No, I am not going to yell obscenities at you. That is only 10% of people with Tourette’s. That is called Coprolalia and Copropraxia.Coprolalia means using obscene or unacceptable language. Copropraxia means making obscene or otherwise unacceptable movements or gestures. Though I can’t imagine the embarrassment and judgement those with Coprolalia go through, I can relate. My vocals are quite annoying. I will cough, sniff, or clear my throat constantly. My 9 year old started this tic about a year ago, so I now understand how annoyed my mom and sisters were with me, however, I also empathise with her because I know she can not control it.
Tourette’s can be hereditary.
It is important for families to understand that genetic predisposition may not necessarily result in full-blown TS; instead, it may express itself as a milder tic disorder or as obsessive-compulsive behaviors. It is also possible that the gene-carrying offspring will not develop any TS symptoms. Because it is neurological, it is closely associated with other neurological conditions such as autism, epilepsy, and others. I have a daughter who has epilepsy. I also have a daughter showing some vocal tics but no physical. She may outgrow this or she may not.
Tourette’s has many comorbids.
Many individuals with TS experience additional neurobehavioral problems that often cause more impairment than the tics themselves. These include inattention, ADHD, academic problems, obsessive-compulsive disorder (OCD), anxiety, oppositional defiant disorder (ODD), or autism. For example I have some OCD tendencies; If I touch one side of my arm or leg, I must touch the other. Or all volumes need to be on an even number – every time. I can joke that I did not inherit the OCD cleaning gene. I am not a germ phone nor is my house spotless.
TS affects my sleep pattern.
Tourettes can have a big impact on how well somebody sleeps. Tics make it hard for me to stay still and quiet enough to get to sleep. Most of my vocals really act up before bed along with a lot of physical as well. It sometimes takes 2 or 3 hours to get to bed. So if I go to bed at 10, I may not actually fall asleep until midnight.
I can do anything anyone else can.
I am lucky that I am able to do all things. Tourette’s has not slowed me down. I am also lucky to not have many co-morbids with my Tourette’s. A lot of people do and that can be extremely hard to deal with. Sometimes comorbids are worse than the tics themselves. I also have friends in support groups who question whether a certain behavior is a tic or from a co-morbid. Sometimes it is hard to distinguish.
A lot of people with TS have sensory issues.
I do have sensitivity to loud noises or background noises. I can handle a kid crying or throwing a tantrum, but if you throw in a loud TV in the background, that will set me over the edge. Unfortunately, my husband is partially deaf in one ear so you can imagine how many issues come up about the TV or stereo volume. Plus, it must be on an even number. I also may not hear what someone says because the background noise is too great to focus on the person I am conversing with.
I never “make up” a tic.
If I tic, it is real. However, sometimes I really do have a cold so I will just be coughing or sniffing because of sinuses or chest congestion. I do tend to downplay my tics using the excuse that it is related to allergies, a cold, or sinuses though.
All this was to say, that I understand the struggles TS brings. I have a husband, three kids, two jobs, and am going back to school. There is just no time to wallow in any self pity for my Tourette’s. There is no time to worry about whether someone is looking at me funny. I pray now for God to give me peace and I can face the day knowing that even when my ticking is really bad, God has my back and I can get through it. It is not easy some days and I know there are so many worse things out there so I choose to be happy with all that I am blessed with and keep going strong each day, mostly as an example to my children. I want to show them that everyday is beautiful no matter what happens in life because I love God and He loves me. Thanks for listening to my story.