It’s day 1 of Tourette Syndrome Awareness Month, and I’m loving the new enthusiasm for advocacy and awareness that people are showing up with.
But, I’m fed up (yes, already) with the victim-mentality-memes that tend to crop up in especially abundant supply this time of the year.
If you’ve been on social media for very long at all, you likely know the ones I’m talking about.
Someone makes a show of awareness...but only to complain about their life. “I’m so tired”, or “tourette is making me miserable”, but the statement is never followed by the why or how, any actionable information, or any sort of explanation that makes awareness efforts valuable or helpful at all.
Or, worse, a parent describes their child’s struggles, but it’s only for the sake of complaining about how tired they are and how sorry they feel for themselves. They’ll post all about their child’s medical struggles, but the point is not to actually raise any measure of sympathy or acceptance for the person experiencing the symptoms. The parent just wants to complain about how hard their child’s involuntary symptoms make life for them.
Seriously, this one is the worst. Don’t do this. Not only is it not helpful for awareness, but statements like this carry a large potential to actively harm the psychological development of your child and/or other young people who are just starting to form their self-image and a likely complex, difficult relationship with the symptoms of their life-long disorder.
It’s 100% valid to be tired as a special needs parent and to talk about your own needs & how you can be supported in raising kiddos with TS (or other medical conditions).
It’s 100% valid to be tired as a person living with TS, and to simply want others to understand that you are struggling. It’s okay to admit when you need help and to ask for it.
BUT.
Sharing memes and other posts about how hard your life is, how awful parenting your child with TS is, or how you feel sorry for yourself is NOT the energy that will help us move forward.
In order to gain positive ground, people with TS need to work for self-acceptance, confidence, and the ability to leave mental space for our neurological needs in an ever-demanding environment. We need to fight for equal rights throughout the world, and to end the social stigma surrounding our disorder.
We are strong, capable, and resilient people. Don’t undercut that message.
So, this TS Awareness Month, can we collectively agree to focus on spreading positive perspectives? There’s more than enough negativity already.
