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Living with Tourette syndrome is nothing to be embarrassed about

by India News Online Team
August 30, 2024
in Health
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Living with Tourette syndrome is nothing to be embarrassed about
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Kelsey Christensen went from a shy child who avoided the spotlight to a successful television journalist. Residents of the Twin Cities may recognize her on-camera reporting for KSTP 5 Eyewitness News, but others may know her for going public in 2022 about living with Tourette syndrome (TS).

TS is a neurological disorder that causes someone to make involuntary, sudden, and repeated movements or sounds called “tics.” Tic disorders have a range of symptoms. For Kelsey, her tics can include rapid blinking, sniffing, throat clearing, and flexing her neck and wrists at random times. Tics can seem strange to those who don’t understand them, which is why Kelsey started sharing her story after getting a formal diagnosis at age 28. She spoke with NIH MedlinePlus Magazine to raise awareness and understanding of the condition. She wants others with TS to know it doesn’t need to hold them back from living life to the fullest.

When did you first notice you were experiencing tics?

I was in first or second grade, and I was sitting on the bus talking to a friend. I was kind of shy back then. Two kids turned around and said, “What’s wrong with you? Why are you blinking so much? What’s going on?”

I said, “I am?” And they said, “Yeah, it looks so weird. What’s your deal, what’s your problem?” Then I knew I was blinking a lot more than average. I asked my family about it, and they said, “Yeah, you do that a lot. We just didn’t really say anything.” Except then it prompted my family to ask, “Why are you blinking like that?”

The other thing I do is sniff, like pushing air out of my nose. When I was younger, my mom would hear it and ask, “Are you sick? Are you OK?”

How did that feel?

At the time, I was painfully embarrassed because I was so shy I didn’t want attention drawn to me, especially if it was negative. So my feelings were definitely hurt when other kids questioned my tics. I remember it very clearly to this day. People can be cruel. I just thought, “Try and blink less.” But obviously we know that’s not possible with Tourette’s.

How long after that did you talk to someone about your tics?

My mom, rightfully so, thought it was stress induced because I had a lot going on with my family when I was young. She enrolled me in karate when I was 6 or 7 years old to try to “fight it out” and gain more confidence through a rough time in my life. But the karate instructors actually said, “I don’t think this is stress or anxiety. This is Tourette’s.”

My tics were a lot worse when I was a kid. There’s a certain amount you can control when you’re focusing as an adult. It’s hard to do it, but you can.

The instructors and my mom talked. They concluded I was better off without medicine at the time. Plus, I was in good spirits. My mom is an amazing mom. She did the best she could considering the awareness level of Tourette’s back then, which wasn’t very well known.

 

Kelsey Christensen and Sally Christensen at the U.S. Open Fan Week.

 Kelsey says her mother Sally, pictured here with her at the U.S. Open Fan Week, was always supportive when it came to dealing with TS.

You weren’t formally diagnosed until two years ago. Before that, how did you explain your tics to people?

I didn’t really have an understanding or vocabulary for what I was doing. I figured it was probably something like a tic disorder, but I didn’t know why I was doing it. I’ve had people walk up to me in restaurants and say, “Excuse me, why are you blinking like that?” And I’d say, “Why are you asking me that?” Usually when random people ask me about it, I take that approach. Friends wouldn’t ask about it too often because it was just something I did—“That’s just Kelsey.” My ticcing was often just brushed to the side.

When my Tourette’s was officially diagnosed…it wasn’t shocking because I figured that’s probably what it was. The karate instructors were correct! But having the official diagnosis gave me so much clarity and confidence because I finally had an answer I could give to anyone that asked…and most importantly to myself.

Before my diagnosis, I often worried whether my coworkers thought I might be nervous because I was blinking or clearing my throat so much. But now I can say, “No, I am not nervous. I just have Tourette’s, and this is what happens.” The diagnosis is powerful and validating.

Did you ever try to manage tics or avoid triggering situations?

I don’t think I tried to avoid anything or make it better, but it was obvious that stress and a lack of sleep were the two main factors that shot my tics through the roof. My mom and I would be sitting at the dinner table some nights and she’d say, “I think you’re really tired today.” And that told me I was ticcing a lot. So I would try to sleep more.

“It’s OK to ask questions as long as it comes from a good place and wanting to educate yourself. This stuff should be talked about—it’s not a taboo thing.”

Why did you decide to work in TV news if you knew that your tics would be visible on camera?

People ask me that a lot. In the medium of TV, your presentation is always top of mind. But I wasn’t going to let anything stop me from pursuing my passions. I’m glad I didn’t let worry get in the way of what has become a wonderful career.

I have a milder case of Tourette’s, so it seems like I have the ability “turn it off” for a small amount of time if I’m very focused. During a live report, for example. I have clips of myself that are recorded before the camera red light comes on (when you’re live on-air), and I’m just sitting there thinking and blinking rapidly. And then as soon as the red light comes on, I’m not blinking out of control anymore. But as soon as the live shot is over, I have to “get my tics out.”

Breaking news can challenge my disorder due to stress, but it’s something I’ve learned to manage.

What happened when you told your employer about your diagnosis?

I was nervous to tell my news director I have Tourette’s because I worried he was going to think, “Can I trust you on live TV?” But he was so great about it. He said he trusts me as a journalist, and this diagnosis didn’t change that. It made me feel even more confident in the work I do and the people backing me.

During the pandemic, because I have that sniffing tic, I could tell some coworkers were questioning whether I was sick. I could tell by their body language they were worried I was getting COVID-19. I would just tell them, “Hey, this is just something I do. Don’t be worried.”

In today’s climate, people are much more accepting of disorders and struggles people deal with. We all have something we’re dealing with, and that’s what gives us understanding and compassion towards each other. It’s a beautiful thing to see play out.

 

Kelsey Christensen reporting with a camera on the side of the road in Oregon.

 When reporting in the field, Kelsey can manage her tics with concentration and stress management techniques.

Do you use medication or other treatments for your condition?

I have medicine now—clonidine—that I can take as needed as an adult with an official diagnosis. I don’t take it often because it drops your blood pressure, and I have low blood pressure as it is. But I’ll take it once in a while, usually right before bed if it’s a stressful day. I get really sleepy when I take it. When I wake up in the morning, I’ll notice my eyes don’t feel as tired and my sniffing is less frequent.

Did you know anyone else with TS before your diagnosis?

I didn’t know much about Tourette’s at all besides what you see on TV with coprolalia (a verbal tic of saying vulgar or swear words). It was always the butt of the joke.

Once in college, a student went in front of the class—it was a huge lecture hall with about 200 students—and said, “Hey, I have Tourette’s, so just a heads up if I say anything out of the blue.” She would scream words or make noises during class. Classmates, including her, would chuckle for a second if the words pertained to school, usually her expressing her dislike for the teacher. She clearly had an extreme case. I remember being so impressed she had the confidence to be so open about her diagnosis in such a raw way.

The reason I ended up going to the neurologist to be formally diagnosed was because my mom sent me a story by CBS Mornings reporter David Begnaud. He announced on air that he has Tourette’s and explained what tics he has and what it’s like living with the disorder.

I thought it was so brave. I also connected with what he was saying—hey, I do that, too! He paved the path for me to have the confidence to fully dive into why I was ticcing and not be concerned about the answer. I didn’t know anyone else in TV with Tourette’s, and this guy is the lead reporter at a network station. So I thought, “If he can do it, I can do it!” I immediately decided to make an appointment with a neurologist.

And here we are today. I’m telling people, “Hey, I have it, too, and it doesn’t stop me from doing what I want to do.”

 

Fun fact: Kelsey is also a certified paramedic. She first became a medic at age 19 and worked part time while pursuing a career in journalism.

Since speaking publicly about having TS, have you met others with it?

I’ve had so many people reach out to me online who have Tourette’s, or their child has Tourette’s, and they’re just so appreciative of others spreading awareness. Some people also have questions about how it was for me as a kid or want advice about how they should talk to their kid about it. Also, folks saying, “Thank you so much. I learned about this disorder and what to open my mind to.” I also met a cop here in Minnesota who has Tourette’s. It’s nice to be able to discuss the challenges with others who fully understand what you’re going through. It has been a really great journey.

About 1% of the population (more than 3 million people) in the United States has Tourette’s, which was shocking to me because then obviously that means there’s a big spectrum of symptoms. It looks different for everyone.

What do you hope people take away from your story?

When you see people doing things you maybe don’t understand or moving in ways you’re not used to seeing, have the awareness that, hey, it could be Tourette’s. Don’t assume it’s because of anxiety or substance use disorder. And it doesn’t feel good to have people staring or making faces at you. Be sure you’re treating people with kindness and in a way that you would want to be treated.

It’s OK to ask questions as long as it comes from a good place and wanting to educate yourself. This stuff should be talked about—it’s not a taboo thing.

To anyone who faces challenges because of a disorder, I would say, don’t let it ever stop you from doing anything. Because we live in a world where, yes, there are plenty of issues, but there’s also a lot of grace and a lot of understanding. No matter where you fall on the Tourette spectrum, there are options out there to deal with it.

Image credit: Kelsey Christensen

August 22, 2024



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