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Telling friends about your Tourette can be a relief

My tics have been really bad for the past week or so. The stress of the start of the semester, being in all new classes with all new people and having to explain my Tourette’s to them all makes my tics so bad! Right now, just about everything is setting them off — including the awful cold I have … perfect timing.

I’m also supposed to be doing sorority recruitment, which is another thing that’s making my tics worse. Today, though, with my cold, my tics, the total overstimulation caused by the cheering and screaming and crowded rooms of recruitment, and the fact that I was feeling feverish earlier, I had to leave recruitment after about half the day and come back to my dorm. I feel like I’m missing out, but I really didn’t have a choice.

Last night, I went to our last sorority recruitment workshop and our pledge family gathering. I stuck through all of that even though it proved to be too much for me. At the recruitment workshop, I was ticcing so much. My grandbig sister is the sweetest person ever and kept checking in with me at various points during the night when she noticed me ticcing a lot to make sure I was OK.

Each time I told her I was fine, even though I was really pushing my limits by not stepping out of the room to take a sensory break and to fully let my tics out. I told my grandbig and my big sister in my sorority about my Tourette’s during this recruitment officially, even though they both had already suspected I had it.

It was interesting because for the most part I tend to tell people about my Tourette’s before they notice my tics or after they see just a few of my tics, but for my big and grandbig I had kept it from them for a long time. I have always been very afraid to tell people in my sorority for some reason.

Anyway, they both had seen me ticcing far to often in the past so they wouldn’t have really asked about it on their own, but I thought that they should know since I was getting so close to them. I told my big when we were walking to get lunch together when I was ticcing a lot by saying in a lighthearted way, “Walking long distances in the cold always seems to set of my tics. Have I told you about my tics before?”

I knew I hadn’t told her about it, obviously, but it just seemed like a lighthearted way to say it and not make a big deal about it. She said “no” and so I proceeded to tell her. Then she told me she had noticed them before in psych class when we sat next to each other, which is interesting to hear because while I of course know that my tics are very noticeable to others, people rarely say it out loud.

Then I told my grandbig in a quick and joking kind of way a few days later. My grandbig and big were both upset about how some things were being run in sorority recruitment, so I made a joke that both my big and I could get out of recruitment if we wanted to because of our medical issues.

My grand big then said, “Right, Jen has Crohn’s disease …” and I added in “and I have Tourette’s Syndrome, but I don’t know if you knew that already.” She responded in a similar way my big did by saying, “I know. I’ve spent enough time around you to know.”

This caught me kind of off guard. I was expecting her to say that she didn’t know or maybe had noticed but didn’t know what it was. I’m glad, though, that she had enough previous knowledge about what Tourette’s was to identify my tics for what they were. Not very many people can do that! She said it in a way like it was no big deal and then we moved on. I really liked how she handled it. She seems to handle everything so well.

Anyway, back to the first story, when I had pushed my body way too far, I stepped out of the room and sat outside and let my body throw its little fit. My body was jerking out of control and my vocal tics were nearly constant. I prayed no one would walk by because I didn’t want anyone to see me like that.

Eventually my body calmed down, but I was probably sitting out there ticcing like that for at least 15 to 30 minutes. I know that might not seem that long to you, but when your body is jerking at a constant rate for that long it’s really exhausting.

When I had calmed down, my friend Roxy walked by to go to the bathroom. All I was thinking was thank god she didn’t come by 5 minutes earlier. When she came out she could tell something was wrong, so she sat with me and talked with me for a few minutes. I told her I was just taking a little break, and she didn’t ask about it further. Then she asked if I wanted to go back in and we went back in together.

I debated whether I should skip out on the pledge family dinner in order to give my body a rest, but I decided that I really didn’t want to miss it and that I wanted to bond with my pledge family. So I decided that I was going to make a trade off. I would go even if it meant ticcing in front of them.

I am hardly ever afraid to tic in front of people, but like I said, my sorority has challenged my ability to be OK with my tics. In a social environment where it’s about fitting in a lot of the time, my tics stand out, so in the past I have tried my best to hold them back in front of my sorority sisters.

During recruitment, though, because I was spending so much time with them, holding my tics back for that long really wasn’t an option for my body if I was going to participate in recruitment. So I told my self what I usually tell myself in these situations, which is something along the lines of, “I can’t help it, I have a neurological disorder, and if they don’t accept me because I have a medical condition that I can’t control, then they aren’t worth my time anyway.”

So I have been ticcing around them all a lot more. I have told a lot of them about my Tourette’s, and I have been pleasantly surprised. They have all been accepting, which deep down I already knew. So I went to the pledge family gathering, I ticced a lot, none of them asked questions, the night was good, and they all made me feel like I was part of the family.

It was so sweet how one of the girls in my pledge family assured me I would be one of the girls to get a little sister and that she would personally make sure of it! It was also so sweet how when I told her that I had run for activities chair and didn’t get it she suggested that I might be able to take over alumnae relations chair when my grandbig graduated.

She told me she would personally push for me to get the position since she has some power in the sorority. Overall it was a great night even though my tics were bad, even though I had pushed my body too far, and even though I had a cold.

My grandbig kept checking in on me to make sure I was alright, wasn’t too tired, and didn’t need to go home yet. She is so sweet to look after me like that. She truly acts like my big sister, and the fact that she and a lot of other people in the sorority officially know about my Tourette’s doesn’t change how they feel about me or act around me.

I feel so glad that I opened up to them and participated in the week’s activities. It would have been so much easier to hide in my room all week, but I am so glad I participated in recruitment even though it meant my sisters would have to see my tics at a more intense level and even though it meant I would have to tell a lot of them about my Tourette’s.

RuthieP

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