You know.. this VERY time last year, it was really starting to become apparent that Ellie had to have some sort of… condition, I mean… I didn’t even know what to call it or what to think honestly but it was becoming very clear to us that she wasn’t in control of a lot of the movements and sounds she made. Months later, I would look right at Mike one night at say… “she has Tourette syndrome, I know it” and then I would be correct upon getting a diagnosis shortly after.
Lots of thoughts, lots of feelings rushed in but one stood out to me and one word seemed to live in my head rent free and it was in big, bold, capitalized red letters.. and it was the word SHAME. I was crushed by the notion that Ellie’s disability that brought on confusion, negative attention and the incorrect assumptions of strangers would bring her more shame than she could handle, and if I’m being honest… than I could handle.
Shame is DANGEROUS. Shame tears really good people apart. Shame gets good people to say and do bad things and hurt others. Shame leads to people taking their lives. Shame causes kind people to turn into bullies, it causes violent behavior and it causes a lot of division and hate. It is truly up to us to recognize when shame is creeping into our lives and dismantle it right away instead of giving it a place to grow and flourish inside ourselves.
Shame is a dark and powerful emotion. My first TRUE understanding of shame was when I discovered Brene Brown. If you haven’t heard of her, she is just… the biggest life-changer with her important and hard discoveries made when it comes to shame and vulnerability. The EASIEST thing you can do right now to absorb her wisdom on shame is to just Google her TedTalk on YouTube and see for yourself. Brene is changing millions of lives and doing important work.. and without her, I don’t know how I would have been strong enough to handle what was about to come next for Ellie.
I pulled myself together and remembered everything I learned about shame. The first thing that came to mind was that shame LOVES secrecy, BUT…. if you bring it into the light and expose it, the power it once held over you disappears. When we share what makes us feel shame or moments that include shame – we are not living quietly with those thoughts and experiences anymore. Community loves to beat down shame together and that is EXACTLY what has happened to us while we’ve chosen to be public and share a lot about Tourette syndrome on social media.
But just to make the connection… why was I so worried about shame when it came to Tourette syndrome? TWO main factors come to mind:
1) Embarrassment: People looking at her weird, treating her differently, mocking her, making fun of her and all that comes along with people mistreating those who have “weird” or different behaviors and mannerisms. Of course, we all know… experiencing embarrassment often leads to shame.
2) Blame: People will blame Ellie and view her involuntary, neurological tics as behaviors instead because they won’t know she has Tourette syndrome or even when they know, they will not understand and STILL treat her like it’s a choice she’s making when it is not at all. This I think is the most frustrating part of all, especially when it comes to the coprolalia (cussing & inappropriate gestures like sticking up her middle finger) – I watch how uncomfortable and panicky grown adults get around her doing this and instead of them looking inward and processing that discomfort, they need to blame HER for the behavior or ME as a mom for the fact that she even knows that behavior to begin with. But… we’ve got entire other blog posts & social media posts on that subject, LOL!
So embarrassment and blame are the sources of the potential shame that made me initially panic over her Tourette syndrome diagnosis. But here’s the fact of the matter:
It is the responsibility of the person WITHOUT the neurological disability to comprehend and accept what involuntary means and to avoid shaming the person in any way shape or form. It is their responsibility to be kind, patient and understanding.
If you disagree with this, I can assume you are a not a safe person for disabled people to be around, but I will also assume that the majority of people who want the world to be a better, kinder place will gladly take on the task of making sure neurologically disabled people aren’t made to feel horrible for showing up in the world and existing just as they are.
Ellie is only 7 years old and she is LITERALLY THE KINDEST HUMAN EVER so the fact that she has to deal with the neurological disability is wild, but the way she handles it – the way she is now PROUD of it and happy to teach others about it, I can’t even say enough about how impressed I am with this little nugget. She is truly changing the world.
We know a lot of people would rather not talk about or share their neurological disability… but for Ellie, it’s healing. It’s a way to keep shame in its place which is nowhere near her. Now… she has a community (local AND on social media) that is literally willing to step in and fight any shame that comes her way when it comes to the way God made her. She finds sharing her story empowering and freeing and I am SO PROUD OF HER because at 7 years old (almost 8!) she’s making a huge impact… and she knows it 🙂
How can WE help dismantle shame for those with Tourette syndrome? We came up with the following ideas below 🙂
Ask them what they need from you. It seems simple, but just taking the time to ask what someone with Tourette syndrome needs can give them permission to lighten their load and put a little bit on us so we can carry that for them! For instance – Ellie could probably tell someone new she is going to meet what Tourette syndrome is, but maybe that day, she wants me to do it for her just to give her a break. I am happy to do so!
Sit with them in the uncomfortable moments and negative attention. If Ellie were to have a tic that sent her to the ground, maybe I would just choose to sit there with her so she felt less alone. Maybe one of her tics was weird and loud and lot of people just heard it… and instead of rushing out and leaving, I sit there with her in the moment and we just laugh or change the subject together. Whatever is happening, I’m going to sit in it with her so she never has to alone.
Reiterate “you are not bothering or annoying me”. It’s a MAJOR CHALLENGE to be the kind of person who is highly noise sensitive to transition to be able to tolerate the constant noises of Tourette syndrome but I work my hardest at it… so telling Ellie over and over that her tics are not bothering me is super important to me and so good for her heart. I can’t live in denial that they bother me though – sometimes I do need headphones or just a break in another room to recompose myself after starting to get triggered… but those with TS do need to know they’re not a burden or annoyance.
Publicly stand up for and protect them. It’s already exhausting enough to tic all the time, so having to defend yourself on top of it? Sometimes those with Tourette syndrome don’t even have the energy to do so. Being the kind of person who doesn’t allow bullying or harassment of any sort for those you love with Tourette syndrome is so necessary. Ellie’s little and big sister are always on top of this one! We are SO proud of how they stand up for her!
Make sure they know they are safe to be fully themselves with you. I write this one out and think… don’t we all need this? We do, as humans. We all need to know we are safe to be fully ourselves around the people we spend our time with. But someone who is wired differently, they may need it more than ever. If you do all of the things listed above… they are guaranteed to know that they are safe to be exactly who they are when they’re with YOU.
Shame has no place in the hearts of those with Tourette syndrome, but people who don’t understand or don’t care to learn are the ones who put it there. They really need our help to make sure they bring any shame them feel to light so we can walk through the process of getting rid of it together. Therefore, it is truly our job to work alongside those who never asked for this disability to make sure that they know shame is not welcome here.