I haven’t written about my tourette’s for a while so I decided it wouldn’t be a bad time to talk about it. I always encourage anyone I’m around to ask me questions about it when they want to know something or don’t understand. I love answering questions and I encourage you to do the same. If you ever have any questions about my tics at all, please come and ask me questions. I love getting to talk about it.
Here’s some questions I’ve gotten.
How do your tics develop?
They develop differently. I have different stories on how tics have developed. There’s some tics that I don’t remember how the developed let alone when they developed. These would be my tics where I shake my head, roll my eyes, gasp, and shake my arms. There are some that I remember how they developed. My most recent one is the word disappointed. This developed because I got a song stuck in my head, the song is Let You Down by NF. One of the words in the first few lines of NF rapping is “Doing everything I can, I don't want to make you disappointed.” This line got stuck in my head and then it got stuck on the word disappointed. I was driving home from work this night listening to NF. I could tell it wanted to come out but I tried really hard to keep it from coming out. I could hear it in my mind. A couple minutes later I lost focus and instead of saying achoo after I gasped, I said disappointed and it has stuck since then. A really funny one is when I got the word achoo. It was a few days after I started to say hello and I kinda stumbled on the h in hello and I thought it sounded like I was going to sneeze and so instead of hello, I said achoo and it has stayed since then.
What do they feel like and do you know they are going to happen before they happen?
So for the longest time, I didn't know how to depict what they felt like. Some people say it’s like a sneeze you have to let out. Some say it’s like an itch, it gets worse until you scratch it. And both of those make sense but the one I like most is the idea that it feels like electricity is flowing through and you need to release it. That’s the best way to describe the motor tics. The vocal tics I still don’t really have a good analogy. I hear the word or sound in my head generally before it comes out. Sometimes they just come out without me realizing it’s about to happen. My clicking tic is a good example of that. Or the tic that reminds me of donkey in Shrek asking Shrek if they are there yet and he smacks his lips together to make a sound. Those two I don’t generally know when they are going to happen. But the achoo and disappointed I can generally tell when it is about to happen. My motor tics are 50/50. There’s this thing called a tic signal that most people feel. This is a sensation in the body that happens right before they happen. It can be a tingly sensation or just some kind of warning sign. I get it with some of my tics but not all of the time and even if I do get the tic signal with the tic, it doesn’t always happen every time.
How are you so positive about it?
The truth is, I’m not. I definitely seem that way around most people and especially at work. I don’t like when people can tell I am frustrated, mad, or upset by them. I am positive about it 70% of the time. I can make jokes about it. I can talk all I want about it. I can laugh about them, I can smile through them. Then we get that 30%. This is usually when my tics are super bad and impact my daily function. Or just when I am in a bad mood and they frustrate me. This I try to not show at least at work or out in public away from my safe people. Around my safe people, I’ll be real about it. I will show I’m frustrated and even say it and get really frustrated about it. That’s not a great side to show but it’s also real life. I’m not always positive about it but also I don’t want the pity looks and words that people give me when they can tell I am frustrated. People will look at me like they feel sorry for me and I hate that look and the feelings it gives me.
How does it mostly affect you?
It affects me in a lot of different ways. One way it affects me is having to be careful when it's silent in an area. This is when my vocal tics act up the most. It’s usually because I’m trying to be quiet that they come out. Work today is a good example of that. I was walking to put my devices up and I did my clicking tic. Well I passed by my ETL’s office and she heard me do it and was like Madison? Now I was being really sarcastic and said that always gives me away. It literally always does. When I try to not be noticed or be quiet is when they will come out the most. My motor tics can affect me in a couple of ways. I have a tic where I drop to a squat type position and it happens whether I’m just standing or walking. This one affects me greatly because with great force, I am sent to the ground. This one is rough when pulling my cart at work or just trying to walk in general. My eye rolling affects me because I’ll be walking and then my eyes roll (which it’s not a normal roll, one goes sideways and the other one looks up and both of them shake. Don’t ask me how I can do this because I honestly don’t know) and then I can’t see much but a very small, blurry bit from the top of my eye that is pointed up. My hands shaking or jerking up or sideways affects me in the way that if I have something in my hand, it probably isn’t anymore unless i had a really good grip on it. I crumple a lot of papers this way. I have punched people this way. Hitting my hand down on things causes a lot of pain and bruising. Hitting my collarbone only affects me when I am in the middle of doing something and it forces me to stop. Even though this one can cause physical pain, I actually don’t mind it a lot. It’s one of my least disruptive tics.
Why don’t you yell out curse words?
Well this type of tourette’s is called coprolalia and it only affects 10% of people who have tourette’s. This is what is most portrayed in movies and tv shows but it’s not the reality for most people with tourette’s. I do not currently struggle with coprolalia.
Can you control it?
So yes and no. I can suppress for a certain amount of time but based on how long I suppress determines if I will have a tic attack afterwards. I can stop them from happening but I deal with the consequences when I stop suppressing them or lose focus from something else. Suppressing can be physically painful and not something I prefer to do. I do it sometimes when I absolutely need to get something done when I can feel my motor tics. If I am doing a pickup with 20 minutes and 20 items I am probably suppressing them until I get done with the cart and then dealing with the consequences afterwards. Sometimes I kinda suppress them on the floor at work so that the guests don’t hear or see me doing it. I don’t really want to have to explain tourette’s to people I don’t know and may never see again. In some cases, I will explain it. Sometimes I just ignore it and hope no one says anything about it. When I was at Justice there was one morning I was working and doing a gasping tic in a way repeatedly and a customer thought I was crying so I just explained like no I have tourette’s its a normal thing. So most of the time I do not say anything to guests but I do if I have to.
How are you so good with communicating about it?
I used to not be. I struggled a lot with not wanting to have to talk about it because
I felt like if I talked about it, people would look at and treat me differently. I didn’t want people to discredit me or think I couldn’t do something because of it. It really has only been since switching to target that I have been able to actively advocate and communicate well about it. I am good about keeping leaders, especially the ETL’s and the leads I interact with the most, in the loop and being like “Hey I have a new tic where I (say/do) _____. Just disregard it. It doesn’t mean anything. It’s nothing to be concerned about. Etc.” I’ve learned that the more open about it I am, the less I deal with stares or unwanted responses.
Do I tell everyone about it?
So this is 50/50. Right now I am training people at work and I hate that I feel like I have to tell them about it. BUT if I don’t tell them about it, I don’t know how they’d respond to my tics and if it’d positive or negative. I don’t know if they would go around talking about it to other people and saying I’m weird or rude or anything. So I basically say the same thing to everyone. I say something along the lines of “just so you know, I have Tourette syndrome so if I do any movement, sound, or word, it’s totally normal” and that has been well received by everyone. I also know that if anything started to happen, I would feel safe to take it up with my leaders if needed to have them help handle it.
Is it painful?
Yes it can be. I have tics where I hit my collarbone or slam my hand/arm down on things. These can cause a lot of pain and bruising. I have a tic where I stomp and I have injured my foot because of it. I have had braces, boots, and wraps all over my legs and arms because of it. It’s just a part of it and while it can be painful, it’s okay.
Do I wish I didn’t have it?
Yes and no. I would not be who I am without it but also there would be a lot less pain and stares and feeling embarrassed if I didn’t have it. I try and look for the positive in it which is that I can help end the stigma around tourettes and show that we are just as able to do something as anyone else.
I wouldn’t wish tourettes and my greatest enemy. I don’t love it but I try to handle it well. I try to handle it in a way that people can see that I had joy even in my trials.
If you have any questions, please ask me! I love answering questions and raising awareness to it!
Hold onto hope and stay strong.
Madison Rae <3
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