‘It’s not rare, it’s rarely diagnosed’: Students share invisible disability


Emily Blobaum/Iowa State Daily

Laura Weiderholt (left) and Taylor Schumacher (right), both have postural orthostatic tachycardia syndrome (POTS), which is a form of dysautonomia that affects the proper functionality of the automatic nervous system. The two met as teaching assistants in their genetics lab. Weiderholt was instrumental in helping Schumacher become diagnosed with POTS last fall.

Emily Blobaum

For many, Nov. 3, 2016 is remembered as the night the Chicago Cubs won the World Series, ending its 108-year drought. But for Taylor Schumacher, that date would be remembered as one that would ultimately change her life forever.

Schumacher, along with her brother and other friends, watched Game 7 from Olde Main Brewing Co. At the start of the game, she felt OK. But with the passing of each inning, she felt progressively worse.

In fact, Schumacher felt so nauseous, she had to leave for her apartment before the game was even over, missing the final out in the 10th inning.

She may have missed the historic win, but she remembers the celebrations on Welch Ave, just several blocks away from her apartment.

“I heard it all while I was in the bathroom [puking my guts out].”

Getting diagnosed

Schumacher’s flu eventually passed. But several of the symptoms lingered. She was exhausted, had little energy, was constantly dizzy and passed out on occasion.

She went to the doctor and had blood work done, but nothing abnormal came back. So she returned to class, where her fellow classmate, Laura Wiederholt, pointed out something wasn’t normal.

Wiederholt, senior in biology, recognized Schumacher’s symptoms as being similar to her own, when she was diagnosed with postural orthostatic tachycardia syndrome (POTS), in 2013.

She referred Schumacher to Dysautonomia International, a non-profit organization that aims to raise awareness about the disorder, and urged her to go to the doctor again.

At the doctor, they administered a tilt table test, and Schumacher passed out within nine minutes of standing up, her heart rate dropping.

The doctors explained it as being orthostatic hypotension, which is a decrease in blood pressure upon standing up, and said there wasn’t much they could do.

But she wasn’t satisfied, so she later went to the Mayo Clinic, where she was then diagnosed with POTS in May of 2017.

The journey to normal

Schumacher, former softball player at Ames High School, was used to working out almost every day, running several miles at a time and lifting weights several days a week. After developing POTS, she couldn’t walk to class or walk up a flight of stairs without taking frequent breaks.

Because she didn’t receive her diagnosis until late May, she spent all of the spring semester not knowing how to take care of herself, much less knowing what was causing her symptoms.

“I didn’t feel like a normal person,” Schumacher said. “I was missing classes all the time, having to drop classes, not being able to work or work out or do the things I really enjoyed. A lot of times I was too tired to socialize with friends so I felt very isolated.”

But after receiving tips from Wiederholt on living a normal life with POTS, she’s started working out again.

Schumacher makes a point to attend one-hour workout sessions with Devin Wilmott, owner of Train with Dev, several days a week.

Wilmott creates workouts that exercise the entire body, but modifies them in a way that they can be done sitting or lying down. She also will incorporate frequent breaks to give Schumacher’s blood time to slow.

Each day is a challenge to find the right balance between getting a good workout in and destroying her body for the rest of the week, Schumacher said.

Upon Wiederholt’s advice, Schumacher also reached out to Student Disability Resources and was able to receive accommodations for exams, as she has trouble focusing with her brain fog. In addition, she also scheduled her classes to be spaced out in increments that give her appropriate breaks to relax.

“I know my limitations and I’ve accepted the fact that I’m not going to be completely normal and do everything that other people can do. I’ve just got to do what I can with what I have.”

Rarely diagnosed

It may have been pure luck that Wiederholt and Schumacher were in the same genetics lab, allowing Schumacher to have a quicker diagnosis process. But in reality, the odds are pretty high that two people within the same area have some form of dysautonomia.

According to Dysautonomia International, it’s estimated that between 1 million and 3 million Americans are affected by POTS.

However, with a combination of symptoms of POTS being common, having no single underlying cause of the illness and having only scraped the surface in terms of research, doctors often have a difficult time recognizing and/or diagnosing it.

“[POTS] isn’t rare, it’s rarely diagnosed,” Wiederholt said. “There could be hundreds more people [that have POTS] on campus.”

Wiederholt, having lived with POTS for over four years, has become an advocate for living with a disability. When she arrived at Iowa State, she began the Alliance for Disability Awareness, a club that aims to promote awareness of and normalize disabilities.

Wiederholt hopes to familiarize people with POTS and dysautonomia, and is glad that she was able to help diagnose someone else with the condition.

“I have a 100 percent diagnosis rate, so far I haven’t been wrong yet.”