What it REALLY feels like to have Tourette and tic

305964_364449676997025_238841111_nChurch didn’t work out on Sunday. I wanted to go with my grandma for Easter. I put on a skirt and a smile and was excited to praise the Lord. I lasted 10 minutes. Everyone was great, but I wasn’t. I just ticced so bad. It reminds me how much my Tourette Syndrome controls me. This is what i want people to know. Here is a glimpse.

People say, “I have Tourette, but Tourette doesn’t have me,” well mine has me… by the throat. And when I don’t do its commands, it smothers and beats me. The torturous effects are ruining my body. Spinal cord and neck damage is serious crap and scares the heck out of me.

I’m sick of being a victim to my own body. I can’t run away, I can’t shut it off. Even when I can “hold them in” to my ability, it’s still there. It’s still ripping at my muscles, ready to burst. It’s playing mind games, saying “Do it now, now, now.”

Not only are my body and vocalizations uncontrollable, but so is my mind. Try going to sleep repeating something as stupid as potatoes over and over again in my head. But that’s not all. By night time, you’re sore and battered. You feel like you’ve been hit by a bus. You take a bunch of medication in hopes you will be knocked out soon and not tic to much in your sleep. You always hope the next day will be better.

The next morning, you wake up immediately contorting and twisting off the bed so you have no choice to get up. You either are stuck for 20 minutes trying to gain some function of your muscles, or you pop up and twitch ’til your dizzy you cant see. But once in a while, you can wake up and get dressed under 10 minutes!

You continue your day hoping for the best, even though you almost always physically feel it wont be. The twisting, twitching, contorting, screaming, etc., is enough to make one physically drained within an hour. Your throat hurts yet is used to the constant scratchiness from the millions of vocalizations you make a day. You gain an immunity to the torturous movements.

If you want to go somewhere, you worry about how far you can walk before collapsing. You feel horrible having your friends push you in a wheelchair. But without it you don’t get to far. You try your best not to be a burden, but someone always says or does something. You know people are looking, yet you ignore. You hear there whispers and their laughs. I just thank the Lord they don’t deal with it, too.

Some days you deal with horrible attacks where it feels like you are a victim of a brutal gang fight. You are beating, battered, whipped, bruised, broken and emotionally destroyed. You feel like you’re falling into a deep hole of emptiness.

Nothing is the same. Life is forever changed by one disorder that is so misunderstood. Welcome to the life of a person with severe Tourette Syndrome.




  1. It’s such a shame that TS does this to people. And every person that has it is just the nicest, most ordinary person. These types of things never happen to wicked evil people. Such a shame.

  2. i’m so sorry that u have it so rough johanna. i couldnt imagine what it would be like to have it that bad. my tics have been raelly bad lately too but not as bad as you. you definitely are a trooper!

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