Sunday, June 5, 2016

Learning, Healing, and Self-acceptance: A New Roommate's Reaction to Tourette's

After months of not having much to write about in terms of Tourette's, I feel like I could write a novel about the past week! For time's sake, I'll try to write a much more concise version (especially with work early tomorrow morning). Where do I even begin? I moved out of the dorms, graduated college, signed the lease for my very first apartment, moved in, met my new roommate, bonded with my new roommate, and started my first full time job! Whew, quite the mouthful!

What I want to write about tonight is my experience telling my roommate about my tics and beginning to live with her. It's been a year and a half since i've lived with a roommate. My previous suite mates in college all knew about my Tourette's and have been very accepting of it, however it was not something I often talked about with them. Especially for the past year and a half to two years I haven't felt very comfortable talking about my TS with anyone except for one close friend (who I have been friends with for 10 years now) and my camp friends who either have TS themselves or have extensive experience with the disorder. I'm not sure exactly why this is. I think it partially has to do with the pressures to conform that I experienced in greek life. While I greatly value the friendships I have gained from greek life, I never felt comfortable talking about my tics around these friends or letting these friends see the full extent of my tics. Also partially due to the highly damaging things my parents and grandparents have said to me about my tics such as that if my employers knew about my Tourette's then doors would close for me, I would never be hired. That if my friends knew about my tics they would abandon me. And that if I told a person I was dating abut my tics they would break up with me. I've since had so many encounters and experiences that have proved my parents SO wrong, however their words stick with me no matter how hard I try to shake them.

Also during the past two years, when no change or transitions are going on, when things are fairly mundane and routine, and when i'm not particularly excited or stressed about something, my tics can be fairly mild. Barring bad days or bad weeks that is. I have the ability to hold in my tics for a period of time, and even though it can be extremely uncomfortable, I choose to hold in my tics around many of my college friends. That's not saying that I never ticced around them. That's just saying that when I was able to, I chose to suppress the larger tics and let them out when I was alone in the privacy of my dorm room. So it wasn't difficult to go longer periods of time without thinking much about my tics or feeling the need to bring up something about them. Coasting along and ignoring the fact that I have TS becomes normal to me. This isn't a bad thing at all, but it makes it so that it really isn't necessary to talk with certain people about my tics.

However, with a new roommate I knew I would have to tell her about my tics. Going to work all day and then coming home to an environment and having to further suppress my tics was simply not going to be an option long term. I decided I needed to be honest with my roommate about my tics from the start. Before she even made the decision to room with me, I told her about my tics. When she asked me what I was looking for in a roommate situation, I told her that I have involuntary muscle movements and vocal sounds called tics and that I was looking for a person who I could feel comfortable being myself around. I was looking for a person who could help create an environment where I felt comfortable, accepted, and not judged in any way. I can't remember exactly what she said to me when I told her this but it was something along the lines of "of course. I completely understand and I wouldn't judge you for something you can't control". This made me feel comfortable straight away.

I wasn't sure if I would have the courage to go beyond this conversation and talk with her more about my tics. Because of the way I had felt about talking about Tourette's in the past two years, I just wasn't sure. However, I soon began watching Britany's videos. In case you haven't seen britney's videos, you can find them on youtube channel here:

Britney talks openly and candidly about her Tourette's in a way that inspired me and gave me the courage to talk with my roommate about my TS in much greater depth. Britney's videos have helped me to feel more confident when it comes to bringing up the topic of my tics and have also helped me to feel less self conscious about my tics in general.  I've always known my tics don't define me, that they're just a part of me but they're certainly not the whole me. They're separate from my personality, my self, and who I am. However, in the past two years I don't think i've felt that this was truly the case very often (even though I knew it intellectually). I was always trying to convince myself that I when I tic around people, they can still see the real me, that they can see me as more than just the girl with Tourette's. I spent much more time trying to convince myself of this than I spent feeling that it was true. I think a combination of watching Britney's videos and coming out from underneath the bubble of college has helped me to truly begin to feel that my tics are just a small part of me and that ticcing in front of others will not change their opinion of who I am.  I could go on and on about how amazing Britney's videos are and how much they have helped me be more confident about the person I am (tics and all!), but I think I better get to the rest of the story. Also check out Britney's amazing blog here:

The other thing that has helped me feel more confident about talking about TS and ticcing more in front of others is the experience i've had so far with my new roommate. After watching more of Britney's videos, I felt ready to talk more openly about my TS with my roommate (just in time for her to move in!). When she moved in I began to bring my tics up in conversation a little more. At first it was just a comment, I joking laughed at the fact that our apartment was so echo-y saying that it was not a good thing for vocal tics because I noticed my tics will echo throughout the apartment. My roommate's reaction was to tell me really not to worry about it. Good sign :)

The next day I asked her if she wanted to accompany me to target and Ikea. She was very enthusiastic and all up for it. That's one thing I love about her, she's so friendly, so easy to talk to, loves to talk with me, and is so far always up for a new adventure such as going out together or coming to Sunday dinner with my high school friend and my family (and is genuinely excited for it too!). We sat on the picnic table outside of Home Depot eating hot dogs and I can't remember how it came up but I found a natural point in the conversation to talk in more depth about my tics with her. I told her that my tics may be a little more frequent and noticeable in these first few months because of it being a period of transition for me (lots of excitement about all the new things in my life but also some stress as well!). I told her my tics will be worse when I come back from camp, that people can "pick up" each others tics, so I may come home with new tics (but the new ones are always short lived!), that tics get worse at camp, and probably some other things too that I can't remember right now. She reacted wonderfully to the conversation. She was engaged and interested while also being empathetic. This is when I learned that she actual has a family member who has tics! No wonder she's pretty good about it. She told me her family member doesn't have vocal tics, but this person's motor tics will come out when they're concentrating on a video game or reading a book without noticing it/ really being aware of it. Always makes me happy and feel more comfortable when I hear when someone has prior knowledge of tics! She knew it was genetic too :)

She told me really not to worry about my tics. This was also before she had heard a majority of my vocal tics though, so she told me she wasn't sure why I was warning her about it so much because she really didn't think it was going to be a problem and that it wasn't going to be something that bothered her. I told her for the most part, warning her was more for me. I feel more comfortable when I know the other person understands my tics and the more comfortable I feel, the less i'll tic.

That night I felt more comfortable letting more of my vocal tics out in the apartment. The thing that made me feel so amazing and accepted was on Friday night. On Friday after work I asked her if she wanted to go out and get some dinner. We had a great time talking and bonding and when we got back to the apartment we talked even more. She told me things about herself and I told her more about me and we realized how much we had in common. She was telling me how she's a very honest person and says what she's thinking a lot, and I told her I really like that quality in my friends. Then she brought up my tics. I was very impressed by this because not a lot of people feel comfortable enough to be the one to bring it up. I'm going to try to write down what she said as close to the way she said it, but I know I won't be able to get it 100%. She said something like "Oh and your tics, they're really fine. They don't brother me. They're just a part of you and they make you special and who you are. I don't want you to have to worry about them. I know you mentioned you have to hold them back at work sometimes, and I want this to be a place where you can come back and not feel like you have to hold tics back here too. I want you to fell comfortable here and around me. I know you haven't done your vocal tics in front of me really, but I want you to feel comfortable doing them in front of me. I don't want you to worry about it."

Outside of camp, my roommate is the ONLY person I have ever encountered who has said something like this to me. She went out of her way to bring up this topic and make sure I knew she wanted me to feel comfortable around her and in our apartment. I was pretty much so amazed that she had said this to me at the time that all I could say was "Thank you so much for saying this. I cannot tell you how much I appreciate it and how much it means to me".  I know I will have the opportunity to thank her in the future as well. I know her words are also a large part of the reason I am beginning to truly feel more comfortable about my tics, and has helped me to begin to feel positive about having tics in front of others. It's hard to explain, but in the past, it's been hard for me for me to maintain my dignity and a positive perception of myself when i'm making silly noises, strange facial expressions, and jerking my body in front of others. For the past couple of days, I've felt more positive about my tics and ticcing in front of others than I have in a long time. Thank you from the bottom of my heart to Britney and my new roommate for helping me to begin a process of healing, self-acceptance, and learning. Tourette's is not something I can control. Even if I can hold back my tics short term, they have to come out eventually. If I go about my day ticcing when I need to, I have less tics, significantly less discomfort/ pain, and no painful and extremely frustrating explosion of tics at the end of the day. Simply put, my life is so much better when I feel comfortable enough to tic around the people i'm with. Coming back from camp this year will be amazing. It will be the first year i'm not afraid to come back, not preparing myself for the intense physical and emotional pain that comes with  leaving the only place where I can tic freely and feel 100% normal, loved, and understood.

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