Yesterday I spoke about the terrible misinformation that people with TS will “outgrow” it, and where that misinformation seems to stem from. Today I want to talk about why it matters!
Imagine you have a child who starts to have tics – which you may or may not identify as tics. If you catch it early enough you might just see odd behaviors and movements that you cannot make sense of. If you do not catch it quickly, or your child’s tics are SUPER physical – (TICS HURT!) Your child gets repetitive overuse injuries and cries out in pain when they tic, but they cannot prevent the tic. How upsetting would those situations be?
Desperate for any way to help your child, you rush to the doctor.
The doctor may tell you they are quirks, or tics, or allergies, or etc. BUT if they identify it correctly (if it is TS) and say “No worries mom/dad! Your child is going through this now, but they will outgrow it, just hang in there!” here is what happens.
Mom and dad go home, feeling super upset their child has this “terrible medical diagnoses” and that if they “just hang on” it will go away and be all better again! They wait, the fret, they often do not seek support, and as time drags on and tics stay the same or (as often happens with hormones) gets worse – they struggle MORE. Waiting for something that will not happen is hard!
WORSE, the child comes to you crying due to pain, bullying, being different, and you decide to go one of two ways:
- Tell the child about the diagnosis, but that it will one day go away – and trap your child in the loop of waiting through years and years with no help.
- You decide to hide it from your child (this never ever works and I will talk about this soon too!) to save them the stress since it will go away – only it never does and the child has no help and is also in the terrible loop!
As you can see, this one piece of misinformation is quite damaging!
Again, Tourette Syndrome is believed to be an inherited neurological condition, it does not just magically go away. SYMPTOMS may ease, but it is still there.
So please, if you or someone you love has been told this – stop waiting. Keep reading, I will talk more about how you can help yourself and your child to deal with this reality.
Let’s blow the shame, embarrassment, misinformation, jokes, discomfort, bullying, and general suckness off of this syndrome! You and or your child will be ok!