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.

Continue reading

OCD IS REAL!!!

It hurts so much to be told by the ones who you love the most that your OCD isn’t real and you should just “get over it”. It hurts so much when I try to explain that OCD is just as real as any other disorder and when my mom tells me that that’s complete BS. She screams at me that it’s my fault and makes me feel so much shame over something I wouldn’t wish on my worst enemy.

This isn’t the first time this has happened, and I’m sure it won’t be the last, but it hurts just as much every time. Mental illness is real. I live with it every day and I know all too well how real it is.

Thank you to everyone who offered me encouragement on my page

Thank you so much to those of you who commented on my post from the other day by coming over to my Facebook page and offering encouragement! Everyone who commented brought light to my day and encouraged me so much. I am so glad to hear that I have helped so many people though my page.

One of my absolute favorite things to hear is that a parent is sharing my posts with their child who has TS. Some of you commented to say that your child looks forward to my posts and that my posts encourage them and make them feel less alone. I cannot express how good this makes me feel and how much I love making a difference in your children’s lives.

I also love hearing how your kids are doing and about how my site is helping them, so please comment on my posts to let me know how things are going or send me a message and it will probably make my day!

Also thank you to those of you who are adults with TS who commented letting me know my posts have helped you! I love to hear that my stories and posts about my “adventures” as a college student living with TS are helpful and inspiring to you.

Today is a much better day. Even though my ticcing is still pretty bad, my body seems to be less sore and seems to have gotten used to the increased ticcing. Also my OCD thoughts are better and I’m moving though my day with a better attitude. I know that all of your comments have contributed to the fact that today has been a lot better .

Need some encouragement today please

I need some positivity and encouragement today, so if you could, I would really appreciate any comment on this post to let me know how this page has helped you or how I have helped you and your family.

I have one week left of classes, reading week and finals, which leads to a lot of stress, but on top of all that I have extra anxiety going on because of something I found out about a family member over Thanksgiving break. I can’t go into much detail about that situation, but it is pretty devastating and life-changing for this person and the rest of our family to say the least.

Yesterday and today my muscles have been extremely sore from ticcing (mainly muscle tics in bed, and even when half asleep). Every time I sneeze, cough or do any type of vocal tic, I am in pain because of the pressure and aggravation the ticcing puts on my already very sore muscles. I was sore and exhausted all day.

My best guess was that I was ticcing through most of the night and didn’t get a lot of deep sleep, hence the sore muscles and exhaustion. A few times I woke myself up from ticcing last night and the night before. My tic where I hit myself in the chest has come back as well, and that’s a rough one.

What is happening is affecting me because not only is this person a member of my family, but my OCD/anxiety is acting up about the situation as well. It’s making my OCD thoughts worse and is making my compulsions worse as well.

Even though it’s very upsetting, one positive is that it’s made me even more grateful for the life I have. It has put a lot of things into perspective and even though my tics are bad right now, I am grateful for my life, all the opportunities I have been given, and for my ability to take full advantage of these opportunities and work hard to finish my college education, apply to grad school (next year), and hopefully use this education I have been given to make a difference in the lives of others through research and clinical work in my future.

I am also grateful that I am able to make a difference in the lives of others now. I love volunteering at my local Children’s Hospital, forging long-term connections with the patients, volunteering at Camp Twitch and Shout, and making a difference in the lives of all of you through this page.

So if you could, please comment about how my Facebook page has helped you and anything else you can think of that you would like to see on the page to help further.

TS Success Stories: Kristin, 17

Would you like to share your TS story? If so, please send a private message to my Facebook page or send me an e-mail at jspershing93@gmail.com. Please answer these questions (by either typing them out or videotaping) and send a picture or two to go with it! Then I will post your story on this page!

Kristin’s Tourette Syndrome Story

Q: What is your name & how old are you?
A: My name is Kristen, I am 17 years old, and I am from Pennsylvania.

Q: How long have you had Tourettes?
A: I was diagnosed with Tourette Syndrome 3 years ago, after my tics suddenly got more severe than they ever were. I had mild tics my whole life, but after a strep infection, they became very severe. I have a dual diagnosis of Tourette Syndrome and PANDAS.

Q: What kind of tics do you have?
A: Like everyone with TS, my tics change all of the time. My most common tics are head shaking, eye blinking, eye rolling, coughing, and moving my arms randomly. Other tics I have had include coprolalia, throat clearing, jumping, rolling around, and stomping. There are honestly too many to count!

Q: Do you have any associated conditions?
A: I have Tourette’s, OCD, anxiety, PANDAS (Pediatric Autoimmune Disorders Associated with Strep Infections), and some sensory problems. Sometimes they have a bigger impact on my life than the TS does!

Q: What’s life like living with TS?
Continue reading