By Ben Brown
If there's one thing I remember from my days taking classes on how to write for an audience, it's that I should find common ground with the reader. In that interest, I'll go ahead and agree with you that these "5 Things" articles aren't always valuable forms of content.
But it's worth pointing out a few things I've learned since starting Tourette's Podcast three complete seasons ago, thanks to the community.
1. Isolation is the (changing) word.
Matter of fact, it's the most frequently used word or theme in the listener email I receive. "I've always felt so isolated." For sure, so many Touretters are going it alone, often hiding their TS (if at all possible) when around other people. They lack in-person friendships with other Touretters and don't see themselves in media portrayals (though there are a few good ones out there). The podcast is no substitute for friendship, but I do often hear from "isolated" listeners that the simple act of hearing fellow Touretters talking openly about their experiences on the podcast, or anywhere, makes them feel "less isolated." All in words I hear. While I type this, I have to point out the inestimable warmth and support-power of the various online TS communities that exist, helping who-knows-how-many people. Same for the meetup groups in localities far and wide. I just went to my first one and it was amazing. More on that soon.
2. Before the podcast, I was unwittingly minimizing coprolalia.
I didn't know I was, but I was. Before this podcast, I rarely told anyone I had Tourette Syndrome, but when I did, I always followed it with, "but not the swearing kind." If memory serves, that's what I told my now-wife in our early days. I probably thought it was a good way to help people understand the difference. But all I was doing was furthering a problem. I was throwing coprolalia farther into the margin. By the start of this podcast, I'd figured that out and given my thoughts near the end of Episode 0, but this came up in great discussion in Season 1, Episode 3, with Melissa C. Water and in many episodes to follow. Melissa and I explored the problem within the Tourette community of TSers distancing themselves from coprolalia, so unfairly. Really, it's something to stop. If you have TS without coprolalia, there's no need to qualify your TS by saying so. "I have Tourette Syndrome" does the job just fine.
If the person you're telling says, "Wait -- but you don't do the swearing thing," just respond with truth: "Some Touretters have what's called coprolalia, which is the involuntary communication of words or phrases that people generally consider obscene or inappropriate. They can't control it, the same way I can't control the tics I have. It's just different ways of having the same disorder, but the characteristics of coprolalia tend to be more attractive to the media and TV producers, so that's why many people's knowledge of TS is limited to the so-called swearing kind."
Yeah, I mean, you can probably communicate that more smoothly, but that's all you need to do. No need to distance ourselves from one another. Your TS is your TS. Mine is mine. They're probably a little different. Maybe they're a lot different. If you've done the "but I don't swear" thing, I know you've never meant it hurtfully. I certainly didn't. But I did realize the wrong and learned better ways explaining myself with the community's help.
3. Adults want more representation.
Not sure I knew how deep this ran before the podcast. Not even sure I knew it was an issue. But it became quickly apparent that adults with TS have long felt underrepresented by available support programming and portrayals, which often seem to have children and their parents more in mind. In no way am I suggesting it's a problem to have great support for children. It's obviously important we do; I was a beneficiary of it when I was a kid and I'll never forget it. At the same time, adults just haven't felt as included. And even if it's just an erroneous perception -- meaning, hey, maybe all along we have had excellent representation and opportunities -- it would be worth addressing all the same. Things ARE changing, though. The Tourette Association of America, for instance, has voiced interest in more for the adult crowd. And the Treating Tourette Together summit this August in Minneapolis, which I'm going to attend, will be a great opportunity to elevate that conversation. Really excited about that, and props to all the organizers making this and related efforts happen.
4. Tourette Syndrome affects all kinds of people.
I think we all know this, probably all along, but I have gotten some questions over the past couple years as to why it seems to affect white boys more than anyone. Remember, though, there's a difference between diagnosis and occurrence, so there may be some assumptions at play. When I put the question to Dr. Christine Conelea, a Tourette researcher who's been great in keeping this podcast straight on science facts, she shared some research and explained this:
"My read of the research is that the TS prevalence likely doesn't differ based on any racial categories, and it generally seems to be equally prevalent worldwide. What does differ is diagnosis rate -- a diagnosis of TS is more likely in non-Hispanic white people in the US. It's likely that the increased diagnosis rate reflects disparities in access to health care, rather than a biologically-based difference."
Important distinctions, there. Diagnosis numbers do not equal occurrence numbers. Though it does look like TS happens more in guys.
"The higher male prevalence is something that is well established, so on that one you can say it is true it happens more in boys," said Dr. Conelea. "There’s no clear answer on why though."
5. Make NO assumptions.
I certainly have. And I'm sure some are cringeworthy. And I'm probbly not even aware of them. This podcast is totally an exploration -- a process of learning, perspective, connections and self-acceptance -- but if you ever hear me say anything off or let any bad info through, call me out so I can straighten the record. I want this podcast to be everything the community deserves.
For me, it's been about learning how to be more empathetic. Tourette Syndrome is a great starter pack on that, being something so commonly misunderstood and socially mistreated, historically. Accepting my own TS has made me a lot more sensitive to plain ol’ fact that people have things going on in their lives -- things they can't control; things that aren’t improved by hassle. It's just been a reminder that we all need room to breathe and be ourselves, even if we don’t understand each other. I think this takes practice, in being more forgiving and checking ourselves. But thoughtful community helps. This one sure has.