Living with Functional Neurological Disorder: Sophomore Disa Tiemeier adapts to xyr ever-changing “normal”

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Courtesy of Disa Tiemeier

Checking the thermometer, sophomore Disa Tiemeier makes sugar glass while experimenting in the kitchen. Tiemeier relied on baking to cope with xyr Functional Neurological Disorder (FND). “I bake or nap to take breaks because pulling myself out of a [situation] is helpful. I’ve been baking my entire life, and I enjoy anything [culinary] altogether,” Tiemeier said.

Since developing tics in January 2020, sophomore Disa Tiemeier has learned to cope with xyr condition as a student, peer and person.

As the tics increased in frequency and intensity, Tiemeier visited numerous hospitals and doctors before receiving an umbrella term for the condition: Functional Neurological Disorder (FND), a disorder caused by a disconnect from the brain to the rest of the body. In Tiemeier’s case, this led to verbal and motor tics, pain and missed hunger and fatigue cues. 

Though Tiemeier could now put a name to what was wrong, the diagnosis did not define treatment plans, coping strategies or an action plan.

“[My initial tics were] my head being pulled back very aggressively. I’d get stuck there and couldn’t move my neck. They started so slowly [that] it was normalized, but at some point, they got bigger. I was confused and upset because I didn’t know what was happening — no one did, and I couldn’t do anything,” Tiemeier said.

The tics worsened during the summer of 2020 as Tiemeier adjusted to attending school in person with a neurological condition. Tiemeier’s tics have decreased in severity and frequency since then, but Tiemeier still gets triggered by daily occurrences.

“I need to take breaks from regular activities. There [are] some days where my legs stop working, and I fall and can’t go anywhere,” Tiemeier said. “Loud sounds are overwhelming too because it’s in my brain, so anything shocking or stress-causing can make them worse. There are things you used to be able to do that you can’t do because of your tics.”

FND shaped my future, and the idea of how the rest of my life will go. There is hope, but [I think] I’d be virtually the same except for a small possibility. [Having my symptoms] stop is just a permanent what-if.”

— Disa Tiemeier

Tiemeier’s condition impacts life at school as well. Doctor’s appointments and trips to the nurse cause xem to fall behind in classes.

“Most times, people notice because it’s a more outward, especially with the vocal and motion [tics]. Usually, they’re big, loud or I hit something, so there’s noise. People don’t say anything; they just stare. It makes me feel awkward there’s a spotlight on me all of a sudden. All these people are aware of [my condition], and there’s nothing I can do about it.”

However, Tiemeier has strategies — in and out of school — to help xem cope with FND and its life impacts, such as music and familial support.

“[Music is] a good way to regulate my brain, so it doesn’t get disrupted by [the loudness]. Any music I have listened to before is good because my brain knows it is familiar; it’s a pattern that it can understand. I rely on it because it’s an easy baseline that [I] can hit during school without being disruptive or having to leave, while still being able to listen and learn,” Tiemeier said. “My family and friends [are my main supporters] through it all, being willing to take me to doctors and work around my problems.”

Rehearsing for the fall play, sophomore Disa Tiemeier smiles with friends on the set of “Silent Sky.” Tiemeier has a support system in xyr friends and goes to them for comfort and reassurance. “My friends have been the first ones there to comfort me and show that they’re supporting me and they’re there for me. They’re so accepting of me no matter what,” Tiemeier said. (Disa Tiemeier)

Although Tiemeier has parent, sibling and friend support, xey still receive questions from peers about xyr hidden disability.

“I’ve had many people not believe me, and I’ve been told I’m doing it for attention. It makes me boil inside. I am not; I don’t want that attention, and not this way,” Tiemeier said. “I was talking to someone and said I was disabled, but the response was, ‘where’s your wheelchair? Where’s your cane?’ It made me feel so invalidated, like my struggle didn’t exist, and everything I’ve gone through wasn’t valid because I don’t use a mobility aid. I’m willing to answer questions, but [many people] are ableist or don’t ask respectfully.”

However, Tiemeier learned to grow and accept xyr new normal.

“I’ve become more aware [of] myself and other people. I’m more responsible now because I have to be. I look back at how things were [initially] because I sometimes [forgot how] terrible it was at the start. Everything was thrown at me, but now I know more and have more control,” Tiemeier said.