Bringing Awareness Through Honesty

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Hi Everyone, I know it’s been a long time since I’ve written in here, but I have been busy with work as well as working on my video blog which has gotten quite the response from my viewers and I couldn’t be happier about that! So, for all those that follow here, thank you, and please take a moment to check out my videos for more content on spreading education and awareness on Tourette Syndrome!

Today’s post is about being honest about our disorders with everyone. I have been very open about Tourette Syndrome ever since I was diagnosed. For me, it was just something I had, it wasn’t who I was, and it most definitely wasn’t going to be something that ruled or determined my life. I know that being open about something like this can be difficult, and way easier said than done, but I promise being open about it is much better than trying to hide it and not let people understand the real you. What we do with our bodies, or the noises we make can be embarrassing, and people do not always understand, or always believe us. But, the reason they don’t understand or believe us is because television and the media does nothing but stigmatize our disorder. It makes what we live with a joke, and so when we tell people that’s what we have, swearing or obscenities are their first thought.  By being honest about Tourettes, it allows more people to understand that what we deal with, is not a joke, and it’s both painfully and emotionally exhausting. It also lets people see that we’re just like them, we just move and talk/yell more than the average person, and that’s completely out of our control.

I believe that being honest has helped me grow into a confident woman and has given me the mindset to not let anything get in my way. I refuse to let Tourette Syndrome define me and I would hope everyone else with TS can one day feel the same way. I know I am in a different mindset than most, and it’s very hard to get to this point, but I hope that if you’re reading this and you’re struggling with letting your tics out in front of people close to you, or at work, that you know it’s okay to let it out. It will feel much better being yourself, and not letting what other people think about you make you feel insecure. The way I see it, I can’t help it when my body moves, and if someone has a problem with that, then I don’t really care if they’re a big part of my life anyway. If someone can’t handle your TS, knowing that it hurts and bothers you way more than it does them, then they don’t matter. Take ownership of what you have, and let it drive you to prove everyone wrong. People think that we can’t do what other people an do, but we are just as competent to do anything. Tourettes makes us stronger people, and so that should be a selling point of who you are. I always make sure to tell people who are around me a lot so that they know I’m not crazy, I just move a lot. I tell people in job interviews, and all other important people in my life so in case a really bad day happens, they know for the most part what is happening with me and that I know what I need to do to try and calm down. I think looking at it in that aspect has helped me to become who I am today and thrive in my work and personal life, rather than hinder them.

Start with just one person, tell them about TS, and teach them what it really is. I promise in the end it will make you feel better about yourself and all your unique qualities that TS gives you. Don’t let the negative people ruin who you are as a person, you’re so much more than what this world thinks you are.

Adding an Outlet

Hi everyone, I know it has been a while (too long), but I just wanted to share this video with all of those that are subscribed to my blog so that you can put a face and a voice to all my posts I have written. I was terrified to make this video, so I’m really proud of myself for going through it, especially since it took a lot for me to actually click on the “Post” button. Take a moment to watch if you would like, and feel free to share it as well so I can continue to spread awareness everywhere. Hopefully one day we will live in a world where Tourette Syndrome is known and not just made fun of.

Until next time…

 

Why I’m Thankful for Something that Takes Over my Life

A lot of people would think that I hate what living with this disorder does to me. And some days, the days that end in tears, I really do. But, as I said before I would never wish that I never had Tourette Syndrome. Sure, if I woke up tomorrow, and I never ticced again, I would be overjoyed, but I would still have all the lessons living with TS has taught me. I would still be who I am because I lived most of my life without control.

It’s easy to hate what my body does, and it would be easy to tell myself that because I have TS, I won’t get where I want to be in my life. But, I refuse to let it rule my life. Instead, I let TS be the reason I am going to get somewhere and succeed. I want to show other people with the disorder that a diagnosis isn’t the end of your life or your potential. I don’t know if I would have found what I wanted to do with my life if it wasn’t for Tourettes. Writing is something that helps me express all my emotions, good and bad. It has helped me spread awareness about Tourette Syndrome and even help other people, and parents of children who have it and that to me is worth it in itself. I know I’ve said it a hundred times before, but it’s those times where I actually help people, where my writing connects with someone so much that they have to thank me, when I feel like I was given this disorder for a reason.

Living with something that completely takes control over your mind and body, is not something everyone can handle. I think only the strongest of people can deal with this disorder, and based one what I see from people who do have it, that’s true. I wake up every morning wondering what my body is going to do next. I wonder if today will be the day someone says something rude, or judges me for something beyond my control. Sometimes it’s hard for me to accept the stares that I sometimes get in public places, but I always tell myself that it’s not my fault, and it’s their own problem if they have an issue with what I’m doing. I feel bad because I have to stop in my tracks to tic, or I have to stop in the middle of my sentence because I can’t breathe and/or talk and tic at the same time, but I power through the situation and do my best to act as if everything I do is completely normal. It takes a lot out of me by the end of the day, and I always try to remind myself every night that not every day is going to be bad, that the next day can be a good one. I also try to remind myself, that those bad days, make the good ones even better.

Tourette Syndrome has taught me how to get back up when I get knocked down (and believe me, I have definitely been knocked down). It has taught me to never stop fighting for what I want out of my life no matter what the complications may be. Although I still struggle with the concept, it has helped me learn that it’s okay to need help, and it’s okay to break down every once in a while just as long as I don’t stay broken. Sometimes my mind gets clouded when I have a string of terrible days, but with the help of my amazing family and friends, I always push myself out of it.

Without Tourette Syndrome entering my life 19 years ago, I don’t know who I would be today. I don’t think I would have the same goals for my future, or the same determination to make sure I achieve them. I don’t think I would have been able to help and touch lives from around the United States, or empathize for other people going through similar situations. Having Tourette Syndrome can either make you or break you. It’s unfortunately something that isn’t going to go away so the way I see it, I have two choices: I can let all the bad days and the tics ruin the rest of my life, or I can try and fight through the pain and embrace who it has made me today. For the past 19 years, I’ve chosen to embrace it and I hope I can keep doing that for the rest of my life.  I’m thankful everyday for what Tourette Syndrome has taught me and who I am as a person because of it.

A Day in my Shoes

Every morning I wake up feeling like any other person. I hit my alarm clock, pull myself out of the bed, and groggily walk to the door to let my dog out. It’s usually at that point of the day when the ticcing begins. I’m not even awake for a full 20 minutes usually before TS greets me with some part of my body. I’m usually okay while I brush my teeth and do my everyday tasks, but when I sit down to eat my breakfast it starts up again. The feeling of the couch on the back of my arm starts to urge to hit the upper part of my arm and my elbow against the couch. Feeling something touch me in a weird way, or press up against my body can trigger quite the assortment of tics and they are usually the more “violent” if you want to call it of the tics that I have. It’s a weird thing to explain, because it doesn’t even really make sense to me even that just feeling the couch can cause my brain to tell me to elbow the couch cushion, or to slam my back against the back of the couch. The thing that sucks is that as most people know, it is kind of impossible NOT to feel the couch rubbing up against me while I’m sitting down. Because of this, there are times where I will not let myself lean up against the back of the couch just so I don’t feel those triggers begin in my mind.

After breakfast I leave for work, and thankfully I don’t usually tic when I’m driving unless it’s an extra stressful, or a day full of emotions of any kind. I do sometimes blink really hard while I drive, or I push my ankle into the floor of my car until my brain feels complete in the motion. I promise I’m okay while I drive, and I won’t drive if I feel as though it is bad enough to be dangerous, so to the family and friends reading this, you don’t have anything to worry about!

After I get to work and I start walking into the building, I kick my feet, or slide my feet/shoes across the payment in a repetitive motion (I usually tic in even numbers, intervals of 5, or a pattern of some sort, which is where part of the OCD comes in to play) almost the whole time I walk through the parking lot. I try to contain it as much as possible as I walk through the plant of my company to try and avoid any stares that I may get from people who don’t know me and know that I have TS. I then get to my office, let it out a little more because the people in my office know a little bit more about it. I sign onto my computer and I instantly start clicking my mouse over and over again. Just having my hand on the mouse triggers me to start clicking and/or slamming my mouse down on my desk (not usually hard, but still). It’s annoying because of the sheer fact that there is no way I can do my job without holding and clicking on my mouse because I have a desk job where I sit at a computer all day. But, it’s also annoying to me because I can’t help but to think about my co-workers just hearing me click over and over again and it has to be annoying for them too. Obviously there is nothing I can do about it, so I don’t really think about that part too much to be completely honest, because I know it bothers me more than anyone else I’m around since I’m the one who is actually going through it. So, I push through as best as possible, all while trying not to let my ticcing and clicking get in the way of pushing orders through the system.

I go home and go through the same things on my way home as I do in the morning. It’s when I get home when the tics start to amp up and come out at full force because while I’m working I retain a lot of pent up energy because I’m focused and concentrated on what I’m doing. So, when I come home all the tics that weren’t able to come out, do. I start to slam my back on the couch as I do in the morning, I start my facial tics, and sometimes flick my head up. I tic with my jaw, which makes me incredibly sore the next day in my neck. Most of the time I don’t do all of these tics, but there are many days that I do. These tics usually continue pretty regularly until I shower and get ready to go to bed.

I lay down to go to bed and I tic the same way every night. I kick my foot against the bottom of my other one 4-5 times in a row and then do it again with the opposite foot. This pattern continues for a good 10-15 minutes on a good night. I usually don’t do it “right” however and I always have the start the pattern over again. It has to feel right in my brain for my tic to actually feel complete and even then it doesn’t stop me from having to do it again. This tic happens every single night before I fall asleep and it is sometimes accompanied by others as well including slamming my knees together, sometimes actually lifting my back off the bed and then pushing it down into the bed, and multiple others. My poor husband has to lay there with me shaking the entire bed while we are both just trying to fall asleep and that’s when it really bothers me. I know he doesn’t care but I hate knowing that I’m the reason he might not be able to fall asleep. Eventually however, we both fall asleep and the cycle begins again the next morning.


I wanted to write this post because I wanted people to get a feel for an average day in my shoes. Some days are good, some are bad, and I just have to try and power through it all the best I can. The one thing every day has in common is that no matter how good a day I’m having, there is NEVER a day where I don’t tic at all, there are just days where I have a better handle on everything my body/brain throws at me.

More Than What Meets the Eye

About a year ago someone told me that Tourette’s wasn’t as bad as other disorders, that people know what this disorder is and because of that, it shouldn’t have as much awareness as others. I’ll never forget someone saying that to me because of how it made me feel. As human beings we are sometimes inclined to thinking that something we have is way worse than someone else. I personally, have always had a positive attitude about this “companion” that has lived inside of me for the past 18 years, and I think that is definitely the way I should be living my life. However, sometimes I think this outlook on my life backfires in a way because I think people never seem to think it gets difficult for me, or that I have bad days behind closed doors. I would NEVER compare my situation to someone else’s. Everyone has their own battles and they have to fight their own personal demons every single day. With that being said, I think that’s why we need more awareness for everything. I think disorders such as mine and the many others that are out there should be talked about in school. Our teachers should be teaching these things in health class so children know growing up why some people are different and why some other kids and adults act the way that they do. We have such a problem with bullying and even suicide in today’s world and no one has any idea what’s going on inside their heads to try and even help. All anyone ever wants in acceptance and for someone to understand what they are going through.

I have only met a handful of people with Tourette Syndrome, other than in groups online for people just like me. When I tell people about my TS, they also tell me most of the time that they have never met anyone else with it and so I’m the one face they put to the disorder… Most of the time I am a happy person, always telling myself that I’m stronger than this thing that tries to control me. I tell myself and everyone else that I know that it’s NOT going to stop me from doing anything I want to do in life. I refuse to let it ruin or run my life and I have always been like that. However, sometimes I think people see me with what others call strength, and I think they sometimes play it down in their head of what I really go through. I never want to play-down Tourettes because for one, I’m lucky to have a mild case for the most part, and two, I never want anyone else in the world that has Tourettes to have people thinking what they go through isn’t hard. I think the person that said that to me is under that impression because I’m the only person she knows with TS and I try my hardest to not let it break me down, especially in front of other people. But, what she and most people don’t see is the tics that were pent up throughout the day come out the second I come home. They don’t see me stop in the middle of a store to kick my feet on the ground, or slam my knees together. They don’t feel the embarrassment that I sometimes feel not for myself usually, but for those around me. My family and friends who have to stand their and wait for me to stop while I know someone, somewhere, is probably staring wondering what I’m doing. I never want anyone to have pity for me, but at the same time, I never want anyone to EVER think that what I have isn’t hard to live with. I have something inside my brain telling me to do things ALL THE TIME. I can start ticcing by just watching someones facial expressions because my brain tells me that I NEED to do what they just did. I would never be able to fully explain they way I feel when I’m about to tic, and/or while it’s happening. It’s an indescribable feeling, and not in a good way.

I guess what my point is, just because someone with TS, or another disorder doesn’t let it bring them down in their day to day life, doesn’t mean it doesn’t get hard. You should never, ever, think that just because someone seems tough and strong on the outside that what they have isn’t as bad as anything else. I have personally never felt so disrespected in my entire life. It proved just how mush MORE awareness needs to be spread about TS because this person thought that their was enough awareness for it already. Just because there are television shows and movies that make fun of, and stereotype TS does not mean there is awareness. That just means there are people in the world who THINK they know what it is. It makes me feel amazing when I hear people tell me that because they now know someone with TS they take the time to educate someone else on what it really is if they see someone making fun of it and swearing while saying they have Tourette’s. Those who swear and have Coprolalia face embarrassment, harassment, and even sometimes get asked to leave public places because other people don’t understand what they are doing and why. If I can spread awareness and help just one other person, then I feel like I’ve done what I was supposed to do. One of my biggest goals in life is to help others with this disorder, because I know that I was given this for a reason. So please, next time you’re about to say something about someone else’s disorder, or disability, think before you do it, because you have no idea what their lives are like.

Fearing the Future

Scott (my husband) and will be married for two years this September and with that, me graduating college, and us both at a good point in our lives with our jobs/careers, we are talking about having children maybe next year. Although we both feel like we are ready for this next step and we are both looking forward to having a family together, part of me is scared. I’m scared of being a mother, and being in control over another human being. I know this is all normal, and everyone has these feelings when they start to think about building a family. But, the bigger part of me is worried about my children getting Tourette Syndrome. There is a 50% chance that my children could have Tourette’s and that scares me more than anything. It’s not that I wouldn’t love my child just as much as if they wouldn’t have it, but because then it’s my fault. It will be my fault that they don’t have control over their own body and I’m afraid that it will crush me. I don’t want to see my child go through what I go through in my life because I’m afraid they might have it worse than I do. I know I will know how to handle the situation, and I’ll be able to completely understand what’s happening, but, it still scares me. My parent’s raised me to have a positive attitude with my disorder and I have never felt like it made me different or like I was held back because of it and I can only hope to accomplish the same thing.

I have seen other people with TS say they didn’t want to have kids because they thought it would be selfish knowing that there is a chance they would pass it on. I never thought about that before and I’m not really sure I agree with it. I have mixed emotions about thoughts like that because, obviously I know there is a chance that it could happen, but, I don’t think I want to avoid having children just because of that. I still want a family and I don’t want Tourettes to be the reason I don’t have one, and I would never want anyone else with TS to do the same thing. I feel like it’s extremely important to not let TS hold us back from ANYTHING and that includes love and having a family of your own. I have went my whole life making Tourettes my motivation rather than letting it defeat me and I don’t think I would EVER let it not let me experience being a parent. Although I do have many fears and I’m scared to death that my children may end up with TS, but I also don’t think there is a greater family for a child like that to come into than ours. My family has always been so supportive of me, and never made me feel like the oddball because of my Tourettes, everyone embraced it with me and that includes my husbands family as well. To my knowledge they never had experience with this type of thing, but, never once made me feel insecure about it, they welcomed me with open arms and they have been there during the hard times as well.  I know I have the help, and the knowledge to be a parent, and to be a parent of a child with TS, but that doesn’t stop all the fears from circling around my mind from time to time.

When the time does come (no, I am not pregnant right now), I do plan on blogging about my pregnancy experience as well, and I’m interested to see how my TS will handle that entire process. For right now, I will wait and enjoy the time my husband and I have together and hopefully try to put my fears to rest because I know no matter what everything will happen like it’s supposed to.

My Battle

This is really difficult for me to post, because I do not always write poetry as it is not something I’m always comfortable with. However, I’ve been working on this for a while now and I need to stop letting my insecurities stop me from sharing my writing. I hope you all enjoy and get a glimpse at what my life is sometimes like with this disorder. (The title is still a work in progress!)

I feel the urge to move throughout my body

I hear the thoughts begin in my mind

“Just let it out, it will feel better”

“Do it again, that wasn’t right”

My body is something I should control

It’s something I shouldn’t be afraid of.

But, my power to control is lost

And I’m forced to accept my battle

I move in ways I never want to do

My eyes blink, my feet kick, my head flicks

My stomach tightens and my breath shortens

The tic feels complete at least for now

The exhaustion sets in as the day ends

But that doesn’t stop my mind from racing

That doesn’t stop my body from moving

And I’ve lost all control

Sometimes the day ends in tears

While I lie on the couch in frustration

I close my eyes and take a breath

And hope for a better tomorrow

Not everyday is like this

Some days are really great,

Without any movement but my own

I feel powerful and strong

But, even on the bad days

Something tells me that I’m stronger

I’m stronger than I think I am

And maybe I have a purpose

The reason may not be clear now

But, I know it will be someday

My disorder is a part of me

But I am so much more than that

The Support of a Husband

ScottBritney1Year (13 of 20) copy

Since my last post from my mother’s perspective was one of my most read and most popular posts, I thought I would write another from a different person’s point of view. Tonight’s post comes from the point of view of my husband. I see a lot of people on my TS pages worry about if they are ever going to find someone to be with because they are worried there is no one that can deal with it or who can put up with it. I know I’m young and I do not have as many years into marriage as other people, but, our relationship is real, and it is strong. I used to sometimes think that I would never find someone who can “put up” with me and I don’t just mean my moods, and my very blunt and straight forward type of personality, I mean put up with my Tourette Syndrome. I thought that if I got annoyed with myself, there was no way someone else would be able to deal with it too. There are nights where I just sit and tic over and over again while I’m trying to fall asleep, or when I stop dead in my tracks in the middle of the grocery store and start kicking my feet, or anything else my body makes me do. I thought there was no way someone would want to deal with that. When you date someone with Tourettes Syndrome, you have no choice but to take on everything with them and that is what scared me. However, my husband came along and showed me that it was possible to feel loved not in spite of my Tourettes, but because it makes me who I am.

I told my husband, Scott, that I had Tourette Syndrome the day we met. I am always honest and open about my disorder and I figure that if there is even the slightest chance that I may date and fall for someone, I don’t want my Tourettes to get in the way and have my heart broken even more. When I asked Scott what he thought when I first told him about my TS, he said that he was surprised and didn’t know much about it, “I’m not the kind of person that would act like I know a lot about it either or what it’s like, so it was a learning experience for me from day one.” I remember him sitting and listening to me explain what it was like for me and how bad it could get, and he sat there taking it all in, and was understanding about it from day one. I never got the feeling that it scared him or that he thought it was a deal breaker and because of that, the connection was instant. Telling Scott about my disorder from day one is something that I think brought us a lot closer as a couple. I wanted him to know that I was an honest person and I wasn’t afraid to lay it all out on the table. Scott agreed with me when he said “I think it was a test for both of us that started our relationship off in a great way.” Although I knew that myTourette’s didn’t seem like a problem at first, I would sometimes get worried when they would act up while we were trying to relax. Because in my mind, it’s really easy to say that something isn’t a problem, until the “problem” actually shows itself in full force. I asked Scott if he ever thought those bad nights would ever be a problem in our relationship and he told me “Never. If anything, it probably made it stronger from the start. There hasn’t been a single tic that would get in the way of anything…” Hearing the person you love say things like that is one of the greatest things to hear as a person with TS. Especially, because I knew I was the first person to ever show my husband what Tourette Syndrome really was. I changed his perspective about the disorder as well as his family and I was able to teach him about me and many other people like me. Scott explained ” I definitely didn’t realize what was involved with having it and that there were so many different levels of it.” 

Another huge factor that I still sometimes worry about even though I know deep down, he would never let it happen is that it could be an embarrassing situation for the both of us when it happens in public. I kick my feet across the floor when we are walking in grocery stores, or just walking in general and I feel so bad that he has to sit there and wait for me to be able to walk again. I know I should never feel bad about something I cannot control, but it just comes with the territory I guess. But when I ask him if he ever felt embarrassed he just told me “I wouldn’t say it embarrasses me. For a while, I would try to be aware if people were even noticing that anything was happening, I think the main reason I even looked for that is because it would upset me if people were giving you a dirty look or laughing. I know it’s sad, but I expect to hear a rude or ignorant comment someday.” I am also waiting for the day when I hear someone say something ignorant to me. I think it’s important to find someone who can deal with things like my husband does. I think that shows the person suffering from TS that they have someone in their corner. No, they may not understand it completely, or feel what we feel and know exactly what we go through, but to have someone that doesn’t make a huge deal about your tics, someone that comforts you when it happens is huge. Not only does it not embarrass Scott, but he does everything in his power to make it better. “I feel terrible. Seeing someone I love so much have your body do things that you can’t control and to know that there isn’t much I can do about it is just not a good feeling, and a little frustrating that I can’t make it stop.” His love and support has gotten me through a lot of hard days with and without Tourette Syndrome. I know he can’t help either, but, just having him there gives me a little piece of mind.

Because of his strong demeanor and level headedness I asked Scott if it ever scared him, when I had/have really bad days because sometimes it can scare the ones you love when they do not know what to do. There are times where I have no idea what to do either and that can be scary in itself. Scott told me “When you were having panic attacks along with the tics and it was affecting your breathing, yes it scared me. Otherwise it doesn’t really. Knowing that it could pass on to our kids makes me a little nervous, but, everything happens for a reason. If our child does have TS, they will have an amazing role model to look up too and learn from.” My husband and I share the same fears with TS getting passed on to our children, but I know that we will be able to handle it, and the fact that he is able to be honest with me is a big deal. I think putting everything out on the table and really talking about fears and nervousness with my disorder is something that helps our relationship become stronger because of TS, instead of in spite of it.

Having someone come into my life and stay after finding out what some days and nights can be like is huge and it’s something a lot of people with TS think isn’t possible. The right person will come, listen to your story about Tourette Syndrome, watch you tic, cry, and get angry at yourself and everyone around you, but they will stay and do everything they can to try and make it better. I can see the pain in Scott’s eyes when I’m ticcing so much and so bad that I can’t breathe, and I know how much he wishes he could help me and that alone is a comfort. I think it’s important to have someone that knows how hard it can be, and how uncomfortable, but doesn’t think it makes you any different than anyone else. Scott has always told me that he thinks I’m a stronger person because of what I go through and that always makes me feel better and stronger as a person. It takes a special and strong person to get through something that takes control of your body. I’m not saying that to be cocky or anything like that, but because we are all strong. Every single one of us, we have the strength to get back up and face the next day and all the obstacles it may bring even when it takes every ounce of our being to do so.

I want to close this with saying that this wasn’t just a post to brag about my husband (although he’s amazing), but to show people that it is possible to have someone love you and see past the disorder. We all want to find someone that will be there through all the difficult times and as a person with TS, sometimes I have more difficult times than I would like to admit. But, when I thought I wouldn’t find someone who could put up with it, and who wouldn’t get annoyed by it, I did. I truly believe there is someone out there for everyone, and it’s just a matter of finding that person and letting them into your life and your struggles. I think it’s important for both people to be completely honest, and talk about everything. I do not like admitting sometimes when I let my TS get to me, and I try to keep it all in (the emotions), because I hate letting it get me down or “break” me. My husband is someone that makes me talk about things when he knows I need to talk, and he allows me to let all of my emotions out, even if it includes crying because I feel like I can’t take it anymore. I want people to know that it is possible to have a relationship with someone even with TS. We can have the lives of every other person, including relationships and marriages

I just thought I would share this song as well, because it is one that really connected to me with my relationship with my husband and my Tourettes. 🙂

From a Parent’s Perspective

Me with my parents

Some of the biggest worries and questions I see and/or hear about Tourette Syndrome come from a parent raising a child with TS. Because of this, I thought that I would write about my mother, Regina, in today’s post and how she reacted and feels about me having Tourette Syndrome today to try and help other parent’s out there who might be scared or worried about their children -which I completely understand why they would be. My mother is my best friend and I think I owe a lot of how “strong” people say I am to the both of my parents. Throughout my whole life they have never made me feel different, weird, or anything in that sense and they have always taught me to be strong, and to stand up for myself when necessary. It is because of them that I am who I am and that I have such a positive outlook on my life with Tourette Syndrome…

My mom said that when she first noticed my tics, that she naturally didn’t realize that they were tics. She thought that I was just being a kid that wouldn’t sit still. She said in the beginning I would sniff all the time and after she told me to get a tissue, I would tell her that I didn’t need one. This all makes sense to me because when I was a child I remember being told to get a tissue by my mother and my grandma all the time and no matter how much I tried to blow my nose, it never seemed to stop the sniffling. She told me that she my grandma babysat my brother one and me night and she told my mom that I “would not sit still” and that is when she paid even closer attention to what my body was doing. On the drive home from my grandmother’s house she noticed me jerking in the seat and asked me if I knew what I was doing and if I was doing it on purpose or not… I remember that ride home from my grandma’s house vividly and I remember my mom asking me those questions and being nervous in my mind because I had no idea what I was doing and I was kind of scared because there was some force taking over my mind and my body. I remember telling my mother that I wasn’t doing anything and that I could not wait to just get home in hopes that the uncontrollable movements would go away.

When I asked my mom if she was scared she explained “I don’t think I was scared. I think I was more concerned, I think grandma was more scared than me.” That concern is what lead her to taking me to urgent care because she wasn’t sure what else to do. The Urgent Care doctors were not able to help me, but recommended me to my neurologist that I still see today if/when necessary. The neurologist asked me and my parents a lot of questions and she also did an exam. She told my mom that she was unable to diagnose me with Tourette Syndrome unless the symptoms continued for a year, so for the next year, I visited the neurologist every 3 months until I was diagnosed with Tourette Syndrome when I was 7 years old. After being diagnosed my mom said that she still pretty much felt the same way as she did before the diagnoses and told me “I wasn’t scared really, I was concerned for you. I didn’t know what to expect.”

A child’s insecurities and lack of fitting in always seems to be a parent’s number one worry whether or not they have TS, but it is a much bigger worry for a lot of parents that I see or hear about while raising a ticcing child. Because of that I asked my mom what it was that she did to help me along the way and how she made sure I didn’t feel any different than any other kid my age. She told me that both her and my dad didn’t want me to be all about Tourettes, they didn’t want me to lose who I was as a person. Because of that she told me “we didn’t make a big deal about it, we went along as if everything was fine.” I think this was very important and made a big impact on my first few years with TS, and especially now. My mom didn’t mention it when I asked her for this blog, but I personally remember my mom not allowing me to watch any of the television specials about Tourette Syndrome because she didn’t want me to have a negative outlook on my disorder and my life. I remember always wanting to watch them with her when I was young, but now that I am older I think it was the right choice. Because, as I got older and she started to let me watch the shows with her, I was able to understand my disorder and I already had a sense of who I was. I was able to feel for the other children or even adults who had TS and I was able to start to get an even better understanding of what my body was doing. I’m thankful she chose to do these things and chose to act as if everything was normal. This allowed me to feed off of my parent’s energy and not get worried or scared about my life and my future.

Another situation parents have to face is telling other people about their child with Tourette Syndrome including family, friends, and the schools. Thankfully for me, I have one very large, loving, and wonderful family that I am incredibly close with. They have all been there for me when I need it on my weaker days, and there to lift me up with jokes or anything else when I need it most. My mother told me that it wasn’t a big family announcement, but just something they told family as they saw them. The one person who was the most concerned according to her was my grandma. “She didn’t want you to have this burden. Everyone was curious about what was going on.” I think to this day, my grandmother is the most concerned about me because she is always calling me after a bad day which I appreciate a lot. Knowing that I have the love and concern of my grandparents and all of my other family members for that matter makes it a lot easier to get through. After telling my family it was time to tell the schools and I was fortunate enough to have a good school system that was willing to accommodate if it was necessary. Some teachers had experience with other students that had Tourette’s so they had an idea on what to expect. One teacher in particular though asked my mother to come in for a parent teacher conference just to learn more about my disorder and to see if there was anything he could do to help. This particular teacher was one of my favorite teachers, for obvious and non obvious reasons. I was lucky that I had teachers that cared and wanted to learn more about me to make sure I felt comfortable in the classroom. Unfortunately, not everyone is so lucky to get a school system and/or teachers like I had growing up.

When I ask my mom what she thinks of Tourette Syndrome now that I have lived with it for the past 18 years she told me that it upsets her when I have a bad day, or when she see’s me ticcing really bad, and that she wishes that she could make it go away. However, she also said that “On the other hand, I think you have it for a reason. I don’t think you would be the person you are today without it, as they say ‘What doesn’t kill you will only make you stronger'” Knowing that my mom sees me as a strong individual even after many tears that I’ve cried because of this makes me feel incredible. She has seen what I go through everyday, she has seen my good days and my bad days and somehow always knows what to say or do to make it better. She has seen me at my worst with my TS and still tells me how strong I am and that alone gives me the strength to get through another day, good or bad.

For other parent’s who have children or family member’s with Tourettes and who are maybe seeking some advice from someone who knows what it’s like she tells them to “Try not to make it all about the Tourettes. Make life as normal as possible.” She also suggested to get the children involved in something that occupy their mind because she knew how much dance has benefitted me throughout my life, especially when it comes to Tourette Syndrome. Dance was something that made me feel as though I was never even diagnosed and I think every child with TS should have a chance to feel that way (look for the earlier blog post on how Dance has helped me throughout the years if you are curious to know more). Lastly my mom says to not treat the child any different than your other children, and for our family the sense of humor was important. She knew that even though I sometimes have really bad days, that I generally have a good sense of humor and I try not to let it bring me down. Once again, I have her and my father both to thank for that. I believe my parents have been EXTREMELY helpful throughout this whole experience. I owe everything to them and without them, I don’t think I would be able to make it through a life with TS as positively as I do. They never let me believe that TS was something that was going to hold me back, but to use it as a motivator in my life. They taught me to never let ANYTHING stand in my way, even my uncontrollable, sometimes embarrassing and sometimes painful movements. Without both my mom and my dad, I don’t know who I would be today and if this blog can help put at least one person’s mind -parent, child, family member or friend of a fellow TS person, at ease, then I have done what I was supposed to do.

More than just Tourette Syndrome

Today’s post is about another “companion” that I have along with my Tourettes. What a lot of people do not realize is that sometimes Tourette Syndrome comes with more than one disorder or syndrome for a child/adult. There are many disorders that a lot of people with TS face and deal with, but, that also doesn’t mean every single person with TS has something else as well. Every single person is different and we all have our own battles that we face. One of those tag along disorders that I deal with is OCD or Obsessive Compulsive Disorder. A lot of people assume that all this disorder is is a need for things to be clean and neat, but that is not all that this is. I’m sure everyone has heard someone in their life say the words “I’m so OCD” because they are trying to keep their house or something else neat and tidy, but what they don’t realize is that it is a compulsion disorder. Yes, I do need things to be clean for the most part and it stresses me out sitting in a dirty room, but I do not always chalk that up to just being my OCD, I think it’s that and just being a human being that does not like messes. So, for this post, I would like to talk about some of the compulsions that I deal with so that maybe people can get an idea of what it’s really like and why sometimes the mixture of the two can take it’s toll on my mind and my body.

One of the BIGGEST and most annoying compulsions that I cannot seem to get a grip on is biting and picking at my lip. I do this constantly and I will continue to do it no matter how bad it hurts or if my lip is bleeding. You think once a person would begin to see blood that he/she would stop, however, it’s extremely difficult for me to do so. Sometimes I don’t even realize that I’m doing it, and others I’m completely aware of whats happening and I’ll tell myself (in my head) to stop doing it and I will -for a split second. I will tell myself to stop, and I will in that moment and then seconds later, I catch myself doing it again. Right now, my lips are sore and they sting, but it still doesn’t stop me. I hate that I do it to myself and I have tried to stop it and only have lasted a couple days in the past. I’m hoping to one day get ahold of this one and be able to stop hurting myself.

Another compulsion of mine is the need to click and tap on my mouse on my computer or on my track pad on my laptop. This is a mix of tics and compulsions I think for me and one day I think I might just accidentally break my computer mouse/trackpad because of it. Whenever my hand is on a mouse, I have the constant urge to click it, over and over and over again. The urge to do this is an extremely uncomfortable feeling, and it feels just like the urges that I have before I tic. It’s a feeling that is pretty much unexplainable to anyone else who doesn’t experience it, but it’s not necessarily the best feeling in the world. It feels like if I just do it that the feeling will go away right after, but, that is not the case. There are times where I have to force myself to get up and walk away from my computer because while I’m typing I can feel the need to click. I have actually already done this exact thing 4-5 times while writing this blog alone (as well as pick my lip!).

I sometimes also have compulsions or weird urges to smash certain foods between my fingers while I’m eating. This one doesn’t happen every time I eat, but often enough that it bothers me. I usually try and avoid doing this as much as I possibly can if I am around people because it’s easier to try and hide it rather than try to explain why I’m doing it. If I do get this urge while in public, I will usually try and hide my hands while I’m doing it. I am not sure if this is related to a texture problem that maybe triggers the urge to do this or if there is no actual trigger and it just happens – I think it is a combination of both. Along with this, there are times that I also, for what seems to be no reason at all, I just push my fingers against my thumb. I do this until my mind says it’s okay to stop pretty much and then I usually do it again at some point.

The compulsions go along with my tics sometimes as well because when I tic, I usually have to tic a very specific way. I think a lot of people just think that when I move my body and or tic, they are completely random movements and there is no rhyme or reason for them. For the most part, that is technically true, because obviously I do not need a reason to tic (although there are situations that makes my tics worse) but, when I’m ticcing, I’m always doing it a certain way. It’s hard to explain and may sound a little weird, but if I tic “wrong” I will have to keep doing it until I have moved in just the right way until I feel as though I completed that particular tic. Unfortunately though, that does not make them stop and I will continuously tic over and over again. So it’s a battle of losing control over my body and trying to gain enough control to move in specific ways. Because of this, it tends to drain me mentally and physically because both my brain and my body are trying to get me to do things that I don’t want to do, but have no choice in doing.

Of course, I have a lot more compulsions than just the few that I have listed above, but these are some of the more predominate situations that I deal with every single day. And these are also just my take on my disorders and how I deal with or go through them. Writing about these compulsions was actually really difficult for me because these are the things that embarrass me, or make me feel like a weirdo, for lack of a better word. I’m not sure why these things make me feel more uncomfortable admitting or doing than some of the off the wall tics that I have had throughout my life, but, I guess it just comes with the territory. With all of that being said,  I think it’s important to let people know the other side of my Tourettes and sometimes other peoples Tourettes as well. It’s important that people try to understand what goes on in our minds and our bodies because when the jokes or comments are made, especially when they come from someone who has no idea, it isn’t always funny. I’ve said before that I don’t get angry at all the jokes because it would be a sad, miserable life if I let every joke that I hear about Tourette Syndrome or OCD upset me, but sometimes the lack of understanding behind the jokes is what causes me to react. Once again, although I would love for all of this to go away at this point in my life, and even with all my quirks and weird tics/compulsions, I wouldn’t change a single thing. All of this makes me who I am and makes me a stronger person every time that I have to push through it.