4 Decades, Wrong Diagnoses and Finally an Answer — January 13th, 2026

I normally get two responses when I say I was searching for an answer for my TS for four decades before I got one. Some people express surprise at this, but others are all too familiar with it. Many people with chronic conditions search for years or decades to get a diagnosis that adequately explains their health problems. This is especially the case for people with conditions that are not commonly understood, for women, and for women with conditions that are not commonly understood!

Tourette’s is on its surface a household name, but actually, most people do not understand what TS looks like in real life. It’s commonly the butt of a joke on the internet and in real life. Just this last fall in 2025, the Irish television show Obituary had a comic relief character with TS, who yelled inappropriate things about women’s behinds compulsively. While lots of disabilities and illnesses are treated as jokes by people who don’t have them, that does not make this portrayal of TS acceptable. Inaccurate portrayals of TS mean that people that have Tourette’s and don’t have a diagnosis don’t have the opportunity to learn about how that label might help them navigate their symptoms. And if that wasn’t enough, people with a Tourette’s diagnosis may feel more judged and isolated when incorrect portrayals of their condition float around. 

Lack of adequate information about Tourette Syndrome is not just a problem in pop culture. It’s also a problem in the scientific community. Very little research has been done on TS and particularly in TS in adults. The CDC spends just $2500 a year on TS (nope, that’s the right number of 0s!) and NONE of this goes to research about adults. This is the case with many common conditions, syndromes, and diseases which for one reason or another are not considered priorities in research according to institutions like the CDC. 

Women also face a lot of barriers to getting chronic illnesses diagnosed. As this Danish study showed back in 2019, women are diagnosed with cancer on average 2.5 years later than men and 4.5 years later for metabolic diseases. This is in part due to biases in medical care. Many times, people with chronic conditions are told our conditions are just due to stress, and this is especially true with women who are more likely to be considered “hysterical” or “overreacting.” This even happened to me not just in doctors’ offices, but also in society in general. Shortly after I came out as having Tourette’s and launched Facing Tourette’s, someone accused me on social media of not having Tourette Syndrome and just being an “uppity woman.” Another factor in how much longer it takes for women to get diagnosed with a health condition as opposed to men is that those of us with these conditions typically have to be our own advocates and really fight for our experiences to be understood and taken seriously. Women are traditionally trained culturally to not speak up as loudly about our needs, which makes it even harder for us to be heard in a doctors’ office. 

All of these factors were especially true back when I was a child in the 70s and 80s in a small town in Southeastern New Mexico. There was nothing close to a neurologist in my town, nor were my parents the sort who would think to take me to a psychologist about my “bad habit.” So, young girl in a town with few resources, with a “non-stereotypical” presentation of Tourette’s? Any hope of an accurate diagnosis and treatment? Fuggedaboutit. 

My journey to get a diagnosis took over forty years from when I first began really presenting Tourette symptoms at twelve years old, and there were a number of detours and misadventures along the way. My parents were very keyed in to my physical health and on top of things like colds, but when I started compulsively blinking and sniffing, my mother was more annoyed at  my “bad habit” than anything, and my father didn’t seem to notice. They weren’t bad parents, they just didn’t have all the information and skills they needed in order to help me. Even though I think my mother’s drive to help me was less about fixing the root cause and more about keeping up appearances, if I’m being honest, she did start to think outside the box! Like, for instance, driving 5 hours one way up to Albuquerque so I could see a hypnotist. The weird part about the hypnotism was it did kind of help my tics for a while, but then they started back up! I still have no idea why it helped. Maybe it was the placebo effect. I learned years later that tics wax and wane or ebb and flow on their own, so maybe it’s just a total coincidence that my tics lessened for a little while. 

Other misadventures in finding a diagnosis came later. At one point an oculoplastic doctor misdiagnosed me with dystonia, which led to me getting Botox injections to try to keep the muscles in my eyes from doing the compulsive, hard blinking that comes along with my Tourette. While the first round helped a little, the second round was a disaster— one of my eyes did not close for 6 weeks! It was terrifying and sad and made me even more self conscious than the blinking did. 

Fortunately, however, the Botox reaction faded and I was able to close both my eyes again. After a few more years of stress and a very dismissive neurologist who told me it was just a habit, I eventually got in touch with the right neurologist for me and got an answer. I just wish it hadn’t taken over 40 years… still, better late than never. 

For further reading, here’s a thought-provoking article for further information about why chronic conditions take so long to diagnose and treat.

Thank you for reading and for Facing Tourette’s with me!