“Oh you had Tourette Syndrome?”
The neurologist smiled as she met my eye. She was smartly dressed, exuding an air of the confidence and firm - albeit friendly - authority which I’m sure success in a position such as hers necessitates.
I paused, then replied. “Have. I have Tourette Syndrome.”
The doctor looked puzzled, not knowing what to make of my answer.
This sort of exchange may seem odd, and it might in fact be odd, but it is far from uncommon. I can’t tell you how many conversations in the past year alone have followed the same script. I am not alone in this experience, either. In the Tourette Syndrome community one of the most common types of stories one encounters are of the juxtaposition between adults with Tourette Syndrome and their doctors who do not believe it possible that their symptoms have continued to persist.
You see, Tourette Syndrome is a “childhood disorder”. Its sufferers are mainly children. According to dogma, the disorder begins in childhood, reaches peak severity in the years just before adolescence, and tapers off such that it disappears almost completely. Children suffering from blinks and sniffles become awkward twitching teenagers before finally - and thankfully - completing the metamorphosis into graceful symptomless adults.
This is the narrative that doctors learn, and that is passed on to individuals with TS and their families at the point of diagnosis, usually in childhood. “Don’t worry, it won’t always be this way. You’ll grow out of it. Almost everyone does!”
Only, they don’t. The tragic fact - the elephant in the room, if you will - is that the dogma is unfounded and completely, utterly untrue.
To quote a friend of mine: “Children with Tourette Syndrome grow up to be adults with Tourette Syndrome.”
So where did a piece of misinformation this astronomical come from? The shocking answer: one study, conducted decades ago, with a pitifully small sample size of about thirty people, and which included no one over the age of twenty-five.
Again: the study which birthed the dogmatic idea of a natural progression to remission in adulthood DID NOT INCLUDE ADULTS.
Anecdotal evidence has pointed blatantly for years to the fact that adults remain who never outgrew their Tourette Syndrome. In fact, adults remain who have tics reaching into the highest end of the severity scale, thought by some to be reserved only for those firmly gripped by the throes of mid-puberty exacerbation. Anyone could see it; they needed only to look.
And now, finally, some people are looking. Re-examination of the question has brought forth preliminary evidence that Tourette Syndrome does, in fact, persist well beyond one’s formative years.
While I and many others are glad that the scientific method is correcting its own rather enormous error, we are left to live with the repercussions of past events. And these repercussions are gut-wrenching.
Brand-new research may finally verify what we’ve been saying all along, but generations of professionals remain in the world who are firmly entrenched in the narrative that adults with Tourette Syndrome do not exist. These people are our primary doctors, our neurologists, our psychologists, our social workers, and any other brand of professional support which a person suffering from severe Tourette Syndrome might rely on.
And this leads back to the beginning of my post, to that conversation with my neurologist earlier this year.
I’d gone to her very sick. At the age of twenty-two, a new complication of my Tourette Syndrome had arisen and I was severely in need of diagnosis and medical help. I went to her hopeful for a quick resolution. I left with only the frustration of a conversation with someone who was so misinformed about my disorder that they not only did not know how to help me, they did not even believe that I was suffering.
It took a year to find a neurologist who knew the truth about adults with Tourette Syndrome and who was willing to take me on as a patient, given my age. That meant that I waited for an entire year, extraordinarily ill, scared out of my mind, and with neither help nor explanation for my symptoms.
I don’t mean to paint a grim picture - things are changing. People are learning. There is more hope now for adults with Tourette Syndrome than there ever has been in the past. No. My goal in sharing this story is not to convey a lack of hope for the future, but to speak honestly about the struggles that I and so many others are living right now.
Why?
The reality that we exist needs to be known. I am hopeful for my future, but I know that if I want to see change happen, I need to push for it. If I want my voice heard, I need to speak.
And my message, ultimately, is this:
Tourette Syndrome is not a horrible thing to close your eyes against and wait until it goes away. It’s not a sentence of a horrible life. There are stretches of the road that are difficult, sure, but there is also abundant joy to be found in a life with Tourette Syndrome. In this way it’s really no different than any other thing in life. While Tourette Syndrome has been, as it is for me now, a source of suffering, it has also been the source of learning, growth, opportunity, and relationships. Without this source of pain, experiences that have deeply enriched my life would never have existed.
So, I am not angry or bitter about this particular card I happened to draw in the genetic lottery. I accept it. I am grateful for it.
Yet, I wish to be seen. I wish to be acknowledged. I wish to be heard.
I wish to be helped.
So in order to inspire hope in the children just learning to deal with this same lot, there’s no need to make promises that it’ll disappear.
In fact, it’s best for all of us if you don’t.
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