As a Woman With Tourette Syndrome, It Took Me Years to Get a Diagnosis and Proper Treatment. Unfortunately, I’m Far From Alone

Growing up, I was a nervous child with a few quirks. I was afraid of heights, and I never stepped on the cracks of floor tiles at the mall. I blinked too much. I was called “particular,” but then again, many children are.

But sometime shortly after I turned 8, I suddenly had the urge to stretch my neck. Not just once—it was a regular, persistent sensation, and it would not go away until I gave in.

For a visual, it was like I was a giraffe desperately reaching for the leaves at the top of a tree. And no matter what I did, I couldn’t stop.

After several days of this, my parents decided I needed to see a doctor. Initially, they were dismissed and told they were being overprotective since I was an only child. However, they persisted and got me a referral to the only pediatric neurologist in our area at the time. The neurologist told my mother that I had “chronic motor tic disorder,” and it was caused by an underlying anxiety disorder and obsessive-compulsive disorder (OCD) traits.

I learned that tics were uncontrollable movements or sounds, which is apparently what I was doing. The neurologist told my mother that, as I aged, my condition would get better. For the time being, I was put on Zoloft to manage my condition and sent on my way.

Year after year, though, my tics would increase, and the dosage would increase along with them.

“Do you think it’s possible she actually has Tourette’s?” my mother asked at one appointment.

The doctor scoffed at her. “No, that’s not possible.”

Ten years after my last appointment with the pediatric neurologist, I sat in another neurology office, my old medical records in hand and a video recording of my tics out of control, worse than they’d ever been. Finally, I was diagnosed with Tourette syndrome—a neurological disorder that causes sudden, uncontrollable, and repetitive movements or vocal sounds —a full 14 years after my symptoms began. And I felt a sense of relief I’d never imagined I’d feel.

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Living with Tourette’s as a woman

Getting a diagnosis let me know that every tic or feeling I had wasn’t my fault. I no longer had to feel like I simply wasn’t trying hard enough to stop what I was experiencing. That alone lifted immense pressure off myself to be “perfect” or “act normal,” because it turns out it was physically impossible.

But the road to get to that point was rough. I stopped going to my original neurologist shortly before my 12th birthday, after he had attempted to wean me off the medication he’d prescribed me. During that process, I experienced my first panic attack (and my second, third, and fourth, all in the same day), but he dismissed this as something I would “eventually get over.”

My pediatrician took over, managing my medication from that point forward, with the main focus on my anxiety and panic disorder.

Before I knew I had Tourette’s, I fielded the occasional comment about my smaller tics.

“What is that?” my very first boyfriend asked me on a Starbucks date.

“What is what?” I asked, confused.

He mimicked what I now know was a motor tic, emphasizing the biggest blink he possibly could.

“I didn’t do that,” I said. I would know if I blinked that way. Right?

“You do it all of the time,” he replied.

At the time, I was offended and also hurt. Shouldn’t I know what I do and don’t do?

“You don’t know what you’re talking about,” I growled, bending over my straw in an attempt to hide my face so he wouldn’t make another comment.

This would be a rinse-and-repeat situation, and I’d shrug off or dismiss anyone showing concern about my tics in hopes they’d drop the subject.

Now, if I bark at people (a common verbal tic in people with Tourette’s), I happily explain to them exactly why I do it. I don’t feel ashamed when my eyebrows lift every time I swallow food. I forgive myself for having to spit food into a napkin when out at a restaurant.

I have to watch my caffeine intake and still take daily medication for my tics and comorbid conditions. Some days, my Tourette’s and comorbidities require me to rest or cancel plans to reset.

Though my tics are worse than they were during childhood, I feel much more confident navigating life now that I know why I have them.

I’m not going to say I have a career and many healthy relationships “despite” Tourette’s. That’s because, for me, embracing my tics goes along with my everyday existence.

But many other women are still waiting for that day to come.

Why are so many women with Tourette’s underdiagnosed or not diagnosed until later in life?

Tourette syndrome is diagnosed in boys far more often than girls—at a ratio of 3 to 1, per the Tourette Association of America (TAA). But it’s likely girls and women with the condition are underdiagnosed or misdiagnosed, which means they don’t get the answers they need as quickly as boys and men with the condition. Several key factors might help explain why:

Women’s symptoms often present much differently than men’s

As with many other neurodivergent conditions (such as ADHD and autism), women with Tourette’s tend to be underdiagnosed, if they’re diagnosed at all. A lot of this has to do with how the condition presents itself, which is very different between males and females.

While boys present symptoms like tics and ADHD earlier (as young as 5 or 6), girls may not show signs and symptoms like tics until later childhood or even into their teen years. What’s more, the symptoms boys often show with their comorbid ADHD may include learning disabilities or defiant behavior, causing more disruption in classrooms and social settings (leading to more urgent solution-seeking).

According to a 2021 study in Neuroscience & Biobehavioral Reviews, females with Tourette syndrome were more likely to have an anxiety or mood disorder than ADHD.

“Girls may be less likely to get a diagnosis because their symptoms are less visible,” says Jordan F. Garris, MD, a pediatric neurologist with UVA Health (and author of the study) who specializes in movement disorders. “Girls also tend to internalize symptoms of OCD or anxiety disorders, making it harder for parents and providers to notice.”

Some symptoms in girls and women may present as simply “politeness” or “good habits,” she adds.

“[Many girls] with anxiety or OCD may need to have something ‘just right,’ or a certain amount of anxiety or OCD may look like a drive to succeed,” Dr. Garris says. “But the symptoms can also cause emotional distress if left untreated.”

Tics and other comorbidities that appear in girlhood often worsen with age

Women tend to have more problems in adulthood, while male patients’ symptoms improve over time.

“I see more adult referrals for women than men,” said David Lichter, MBChB, FRACP, a professor of clinical neurology at the University at Buffalo School of Medicine and Biomedical Sciences. “Tics in males usually present earlier and tend to improve over time. This is often not the case with girls and women.”

In fact, a 2015 study published by Dr. Lichter in European Psychiatry points to tics and other factors of Tourette’s being more disruptive and disabling to women over time.

One reason? Because Tourette’s is largely affected by environmental factors and stress, women may have more significant symptoms. “Women often have to deal with more stressors in adulthood, particularly balancing both jobs and significant housework,” Dr. Lichter says.

Indeed, a 2023 Pew Research Study found that married heterosexual women devoted more time to housework and caregiving as opposed to their male partners, and that it was a major stressor for them.

Stigma and misconceptions abound

If you think of Tourette’s as the “cussing disease,” it’s probably because of jokes in comedy movies, shows, diss tracks, you name it. Part of the reason I never considered Tourette’s is because I assumed it was, well, that. 

Maybe that’s part of the reason why the TAA reports that 50 percent of those with Tourette’s are going undiagnosed—no one knows what to actually look for.

That, and some tics are so subtle, it’s hard to notice them as anything other than small quirks or “bad habits.”

Even now, I’ll tell people I have Tourette’s, and too many assume I’m making an offensive joke (and either chastise me or laugh).

One other misconception is that Tourette’s is just a boyhood issue. Though the childhood ratio of Tourette’s cases is 4 to 1, suggesting boys are impacted more often, too many people think this means it only affects boys.

“We think of Tourette’s, unfortunately, as a disorder that impacts boys, but females are more impaired by their tics, in both pediatric and adult patients,” says Carine Maurer, MD, PhD, a board-certified neurologist with the Stony Brook TAA Center of Excellence for Tourette Syndrome and Tic Disorders. “Unfortunately, [medical professionals] propagate the misconception that tics go away for everyone.”

What needs to change?

Once I was diagnosed at 22, I wondered if the same delay in diagnosis happens to other women like me.

It does. A lot.

“In my practice, I have a lot of females with symptoms that were put on the back burner for a really long time. They come to me in their early to mid-20s and are relieved to finally have a diagnosis,” Dr. Maurer says.

Medical professionals and the public alike can benefit from learning about and recognizing girlhood symptoms of Tourette’s. Just like more awareness about other neurodivergent conditions, such as ADHD, has popped up, uplifting and pushing more content about Tourette syndrome can break the stigma.

“More realizations turning into diagnoses in the community is essential to getting more awareness and access to more people,” Dr. Maurer says. “It’s [also] important that we educate the populous as well as medical professionals [about Tourette syndrome in women.]”

What should you do if you suspect you have Tourette syndrome?

If you suspect you have Tourette’s and have been flying under the radar, there are a few things you can do:

Keep a record of your symptoms

Already know (or suspect) you have comorbid conditions, such as anxiety? Keep a log of any and all symptoms, including potential tics. Note the dates, how long they last, and other key details.

Gather relevant medical records

If you have a record of comorbid conditions or the presence of tics in medical records, grab copies to bring to your physician. Having any kind of medical documentation is extremely helpful in building your case and getting the answers you need.

Find a neurologist who specializes in movement disorders

This might be easier said than done, but if you have a referral for a neurology appointment, try to book with a neurologist specializing in Tourette’s, or at the very least, movement disorders. It wasn’t until I found a neurologist specializing in movement disorders that I got the answers I needed.

Search for online support groups

Whether directly through the TAA or other platforms like Facebook or Reddit, Tourette support groups have popped up online to provide support to children and adults with Tourette’s and those who suspect they may have it.

The bottom line

Tourette’s is still a long way from being completely understood, especially Tourette syndrome in women, but as more studies and information come out and women advocate for themselves in health care settings, we may start to see a bigger shift in how we understand the disorder.

Even within the past 20 years, there have been major breakthroughs and updates about Tourette syndrome. For me, sharing my story is a way I fight the stigma and encourage others to learn more.

Source: Well and Good