Telling others you have Tourette Syndrome is hard. Actually, hard is an understatement. It’s difficult enough to accept that you don’t have complete control over your body; it can be near torture to admit that to others. While self-advocacy is one of the keys to creating Tourettes Awareness, no one said it would be easy. Here are some steps you can take to make it just a little easier:
Choosing to share your secret
Before you tell someone you have Tourettes, you’re somewhat safe; it’s like living inside a fortress. People who interact with you enough probably know something’s different, but you still hold the knowledge. Only you hold the key to your disorder and all the struggles that come along with it. Like living in a fortress, however, you’re also painfully aware that you’re living alone.
No one sees the tears, and no one sees how much effort it takes for you to stand there calmly not blinking, not squeaking, and struggling not to do any of the other things your body wants to do. Only you know why those things slips out and make you look different from everyone else. You long for someone to bear your burden with you, for someone to tell you it’s okay. But no one can tell you it’s OK if they don’t know there’s a problem in the first place.
Choosing to tell someone you have Tourettes means entrusting them with a piece of yourself. It means you’re willing to risk looking foolish in front of them. You’re giving them the power of knowledge, knowing your vulnerability. You’re admitting, “I’m different.” In a world where we love to share pictures of our perfect deserts, perfect families, perfect lives, it’s hard to admit you’re broken. But you know that if you’re going to find someone to help bear your burden, you must first share it.
Actually sharing your secret
This part is usually pretty short. I mean, there’s not much more that you can say in addition to, “I have Tourette Syndrome.” I think the longest I’ve ever made this conversation was when I was in college and just getting up the nerve to admit that I had Tourettes. I was Instant Messaging a friend (now my husband), and the most I could get out was,
“Have you ever heard of the neurological disorder, Tourette Syndrome? Well, I have it.”
No matter how short this part is, however, it’s the next part that seems to take eternity. Your ears are pounding and your breath is shaky as you draw it in, waiting for the response that will probably determine the strength of your friendship for the rest of your life.
In my experience, this is generally started by an awkward pause, then followed by an awkward, “Oh…you do?” or, “Oh…isn’t that where you like cuss all the time?” In my humble opinion, I think this part is the hardest because people really don’t understand Tourettes in general. It’s fallen victim to too many perpetuated stereotypes, and while it’s one thing for people to joke about Tourettes in everyday context, it’s quite another for your friend to stand there looking at the face of real Tourettes – you.
Unfortunately, this is also where we can be most injured in the process. After exposing the most vulnerable parts of ourselves, those soft spots are now open to embraces, but they’re also open to attacks. I think the most hurtful responses I’ve ever had have been when I was told that if I really wanted to, I could get rid of the Tourettes. While the speakers meant well, their responses basically expressed, “Your struggle isn’t real. If you were a faithful enough Christian, this wouldn’t be a problem.” So not only was my struggle brushed off, but my faith was called into question as well.
Mr. Singleton (from my last post) experienced probably the worst response I’ve ever heard of on a personal level. Being told that you’re making something up for attention, that your daily physical (and mental) fight is a crutch can be emotionally crippling. And then being told that you’re in the wrong for opening up is unfathomable. It’s like holding up an arm when you’re treading water and not only having it ignored, but having it slapped away by someone you thought would help keep you above the surface.
Whether the responses we receive are encouraging, awkward, confusing, or painful, this isn’t the last step. After we’ve opened ourselves up and they’ve responded, there’s one more thing we must consider: How do we respond?
“No one can make you feel inferior without your consent.” – Eleanor Roosevelt
While I believe this is true in the long run, those initial moments can be very painful. If your friend’s response wasn’t exactly sweet and encouraging, it’s easy to want to hole up and never mention the word, “Tourettes,” again. But if you do that, you’re still all alone in your fortress, except for the fact that there’s now a gaping hole in your wall. That, my friend, is no way to live. Here’s my take on it.
It might be tempting to break into a series of insults and possible deserved responses, but I would advise against it, as much as the revenge feels needed at the moment. Can I tell you exactly what to say? No. I’m not you, and I don’t know your situation. That also doesn’t mean you agree with them and shut up about it, however. Feel free to respond with something akin to, “I’m sorry you feel that way. I opened myself up to you so that we could grow closer, but I can see you’re not ready for that. If you ever change your mind, let me know.”
But honestly, how many of us are that eloquent when someone’s just stabbed us in the heart? I’m a frustration crier, which means I’m more likely to get to, “…sorry to hear that…,” before turning and sniffling my way to the bathroom, where I’m going to bawl for half an hour. And that’s alright. Just realistically know that your relationship with that person will probably need some space and time to heal. Not everyone is going to be a bosom buddy. Also remember:
It’s OK to cry. But then, after you cry, you realize that their discomfort is their own, and is in no way your fault. You get up. You remember that in God’s eyes, you’re the beautiful person He created you to be. You find someone else to help fix that hole and share your burden.
It might take some education on your part, sharing information about a disorder that many know little about. But that’s okay. When people realize what a battle you’re fighting, there’s a good chance many of them will gain a new found respect for you. Sometimes, it takes falling down a few times before you find someone to help you get back up. But they’re out there, I promise. And chances are, you’ll find out you’re hardly the only one who feels alone in a fortress.
Note: I’d love to thank Mr. Singleton for sharing such a deep experience with us. Dialogue like that leaves a mark, and affects the recipient deeply. I’m grateful for his willingness to share so that others in similar situations can know they’re not alone.
Please share your experience of sharing your disorder with others, and it doesn’t have to be Tourettes! Do you have any advice you’d like to pass on? Please share your thoughts and questions in the Comment Box below. And don’t forget, you can sign up for my newsletter for extra resources on neurological disorders, education, and spiritual encouragement. As always, thanks for reading!