Tourette’s and OCD, Cousins or Siblings?

I have yet to meet another person with Tourette’s who does not also have at least one comorbid condition. For me, there has not just been one, but at least three of these ‘cousins’ as they are frequently called.

There are so many disorders and syndromes that are so closely related and occur simultaneously that I could not possibly begin to list them all. the symptoms of some disorders are so similar that it is easy to mistake one for another. There are many people who go misdiagnosed because of this. This is why comorbid conditions are often referred to as “cousins”, because they are so similar and closely related, just as members of a family might be.

I have family members who have been mistaken for each other either because they sound like the other person over the phone or because they look so much alike that someone who has not seem either one of them in a long time mistook one for the other. For example, when my sister and my cousin were younger, people mistook them for sisters rather than cousins when they were together. My sister has always looked as though she belonged to my aunt rather than my mother.

Obsessive Compulsive Disorder (OCD) is one of the conditions that can co-occur with Tourette’s. A person with OCD has obsessions and compulsions. Basically, you have an obsession, a thought that will not leave and causes you anxiety, and the only way to relieve that anxiety is to carry out a compulsion. The obsessions and compulsions can consist of a variety of things.

Everyone forgets what day of the week it is once in a while. At least, I think everyone does that once in a while. I’m really hoping it’s not just me. For me, though, it causes this anxiety and I think, “Oh my gosh, I thought today was Saturday and it’s really Friday. What if I forget what day it is tomorrow and something bad happens because I forget what day it is and forget to do something or go somewhere?”  Actually, it feels a bit more like this as it goes through my head,

“OHMYGOSHITHOUGHTTODAYWASSATURDAYANDITSREALLYFRIDAYANDWHATIFIFORGETWHATDAYITISTOMORROWANDSOMETHINGBADHAPPENSBECAUSEIFORGOTWHATDAYITISANDFORGETTODOSOMETHINGORGOSOMEWHEREORSOMETHINGLIKETHAT!?!?!?!?”

To relieve the anxiety caused and keep ‘imagined bad thing that will happen because I forgot what day it was’ from happening, I repeat this over and over in my head or even out loud if it feels necessary, “Tomorrow is Saturday, not Sunday because today is Friday, not Saturday.”

For a lot of us who have both OCD and Tourette’s, it is sometimes easy to mistake the two as siblings.

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Positive distractions

This past weekend was quite difficult. My head jerking tic came back with a vengeance. It has been painful and exhausting. After a day or two, I realized I had a giant lump on the base of the back of my neck. The next day I began one of my hitting tics, which is hitting my shoulder repeatedly. So, as you can imagine, it was not long before I had a bit of a bruise on my right shoulder. Today, I am not ticking nearly as much, but I am still a bit sore.

It was not just physically that I have felt exhausted, but mentally as well. The only other time I could think of when my tics actually hurt was when they first became a huge problem and I was finally diagnosed with Tourette’s. So, those thoughts and the anxiety that it was going to continue getting worse before it would get any better added to the natural effects of sitting around and doing nothing all weekend…well, you can probably imagine how epically BLAH I felt. 

I will admit that by Sunday evening, when I had started my hitting tic, I was beginning to feel downright horrible and slightly depressed. As I sat at home by myself Monday, I started searching within myself for ways to make myself feel better. I quickly discovered that all the old negative coping skills I used to apply in this situation were all that I could think of. I wondered…where have all the positive distractions I had adopted in time?

This morning, as I was browsing the YouTube universe, I came across a video by Emma Blackery about being angry and things to do when you are angry that will help you feel better and calm down. As I was watching this video, I began thinking of the positive distractions and coping skills that I have learned over the years. So, I thought I would share some of the things I love to do that really help calm me down when I’m anxious or upset or angry or help distract me when I am feeling depressed.

NUMBER 1!!!
Music. Everyone loves music. You can’t tell me that you genuinely do not like music of some kind. Not everyone likes the same genre of music or the same artists, but I am pretty positive that we all like some form of music or another. If not, let me know because I have never met anyone who doesn’t.

Anyway…yeah…Music is a great escape. When you can find a song that expresses exactly how you are feeling in that moment, it is as if someone finally understands what you are going through and what you are feeling. And when you find out that someone else likes the same artists or songs, you instantly have something in common with that person that you can talk about. Music brings people together in ways you can’t even imagine. Music can brighten your day and bring a whole new perspective and attitude into your day. Happy music makes people happy!

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2014 NJCTS Children’s Scholarship Award Essay: “Tourette is a Blessing in Disguise”

This is the essay I submitted to the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2014 Children’s Scholarship Award contest. I hope you enjoy it!

My grandmother always told  me that every person  was put  on this  earth for a  purpose. Some people bring music to the world or find new  cures for different  diseases. I,  on the other hand,  was placed  on this  earth to  spread tolerance for  those living with Tourette Syndrome.

I could go on about how horrible it is to  have Tourette Syndrome  and how it  has been embarrassing, depressing  and sometimes painful. I could go on  about how it has negatively affected my life. However, I  am past that stage in my life.

Through my work as a Youth Ambassador  and a Patient-Centered Educator, I  have become confident about living life with this disorder  and have become grateful that I  was blessed with the opportunity to make a difference in the Tourette’s community. I will share that Tourette Syndrome has positively  changed my life.

Tourette Syndrome has molded me into the person I  am today. Having this disorder has brought  me to new  and exciting  places to meet amazing and inspirational people. I want to show people the positives over the negatives of living life with Tourette Syndrome.

Having Tourette Syndrome is like living your life  on repeat. Same tics every day, the same sideways looks from others, and the same  need to explain myself over  and over again. Every day I  share my story in order to  educate the world  about the disorder, to clarify that having Tourette Syndrome rarely entails shouting  curse words  and absurd phrases.

I  can truly say that having Tourettes Syndrome is a blessing in disguise. It  has brought me closer to my friends  and family. It  has brought me to make new friendships  and go places I never thought I would go. I  can confidently  say ” Hi my  name is  Grace Hawruk, and I have Tourette Syndrome.”

Share Your Story: Everything that happens in life can be used for good

Hello, my name is Jasmine. I am 24 years old. If you know me or have read anything I’ve written previously, you know that I have Tourette Syndrome. However, there are a few things about me you may not know.

For example, I have fought a battle for much of my life that a lot of people fight. Like others who fight, I have always fought in private. It is not a battle against others. I have defended against darkness, hopelessness and ultimately myself. Now, I am taking big steps to fight offensively, not defensively. I am not telling you all this for sympathy or for pity. I am simply sharing my story because I know how it feels to wish you weren’t alone. I know that it helps to know that someone out there understands what you are going through. Part of being human is having flaws and faults.

I was diagnosed with depression and anxiety at the age of 18. The fear I felt at having a mental illness was almost as intense as the fear that it would never end. There is so much stigma in the world around us about mental illness. It’s sad, really. I find it sad that people create such stigma. It is such a negative thing.

Not only does it create misunderstanding, but it makes those who already feel so alone in the world feel even more isolated than they did in the first place. It keeps those who truly need help from seeking it out because they are afraid of what people will think of them. We become afraid of being judged and looked at differently. Sadly, that does happen … and it’s because of the stigma. Stigma is why a lot of people, such as myself, suffer in silence for far too long.

I suffered in silence until I absolutely had to find a means of escape. I searched desperately for a way to numb the pain I felt on the inside, so I created a pain I knew the source of and could control of on the outside. That is where self-injury entered the scene. Contrary to the stigma, it was never about attention. It was never an attempt to do permanent damage such as suicide.

In fact, it was something I desperately hid from everyone around me, from all those whom I loved. It was a way to cope so that I could stay alive. Even though it was only a temporary relief, it became an addiction that I couldn’t control and didn’t know how to quit.

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I don’t have anyone like me in my life

My grandma, who is one of my best friends, showed me this website. I was excited that people like me can share stories and talk about our experiences together. I longed to have a spot on the website so I can do the same!

Tourette’s Syndrome affects my life because when I was about 6 years old, my mom noticed some eye blinking and throat clearing behaviors, not knowing they were tics. It’s stopped for a while, but resurfaced when I hit about 12.

Ever since I was in third grade, I stuttered. My speech was sometimes so bad I couldn’t get out sentences. That also stopped for a while, but has always found a way to come back. Around the time my tics appeared again, my stutter was in full swing, and hasn’t stopped since. I am now 14.

My mom was worried about me and was always looking up possibilities that could be causing these tics and my stutter. She thought it might be Tourette’s Syndrome, and I was in denial. I didn’t know what to do. This went on for years — no diagnosis, bad stutter, and tics. I’ve always had Tourette’s like symptoms as well — couldn’t ever fall asleep, OCD, as well as general anxiety and depression.

All still impact my life, and it’s very hard to deal with. So this past November, I went to University of Michigan to find out what’s happening to my body. The neurologist told us that I had Tourette’s Syndrome, and having a name to what was going on felt relieving, yet, I also was at a loss for where to go from there.

The neurologist also told me that my stutter was something along the lines of a vocal tic. It’s all connected in some way. So, being on this blog website would be a release for me to talk to other people like me, since I don’t have anyone like me in my life.