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Women fight for diagnoses and treatment of POTS in the Northwoods

Courtesy of Jody Bognar
Jody Bognar and her dog Mo enjoy a boat ride.

Jody Bognar was never one to sit still.

“I was doing flips, I was, you know, I would go out for hours and hit a tennis ball against our garage door for hours after dinner,” she remembered.

As a child she trained in gymnastics and dance, going on to dance in college while studying education and later narrowing that to physical education in a masters degree.

Now, in her 50’s and living in Minocqua, Bognar is practically bed-bound.

“He said nothing was wrong with me. All my lab tests were fine, you know, my heart was fine, my lungs supposedly were fine, all this.”

Every day, she wakes up with no energy.

Some days, a shower is enough to push her past her physical limits, other days she can manage a shower and laundry.

We’re talking about physical, mental, and emotional absolute exhaustion.

“I tried baking the other day, and I messed up the whole recipe and everything because I was so sick, I was dizzy, I was nauseous, I had to sit down. And then my brain wouldn't work. So I was messing up the recipe and using too much flour and this. And it's just like, you know, but then? Yeah, I got to the end of that. And there's times where I just want to cry, because I'm like, Okay, this is one more thing I'm losing, I don't think I'll ever bake again,” she said.

Declining Health

Bognar’s symptoms go back over 25 years now.

She experienced the whole gamut- dizziness, blood pressure issues, a thumping heart, even fainting- after a concussion with whiplash and viral illness.

However, both of those times, she slowly but surely bounced back.

In 1998, that changed.

Her health declined permanently.

Bognar was pregnant with her first child, a daughter, and went into premature labor.

After the birth, she hemorrhaged and lost a significant amount of blood.

“I was sent home day three from the hospital with a premature baby and I couldn't even walk. I was just so anemic, so sick, I was actually jaundiced, yellow. I was so tired and fatigued and everything. And from that time on, I literally never really recovered my health,” she said.

Her daughter was a small baby, weighing only 4 pounds, but Bognar could barely lift her.

She started going to specialists and desperately searching for some answers.

“He said, what I can do for you is give you a referral for a psychologist and so that was his answer for helping me,” Bognar chuckled remembering.

That was Bognar’s first time experiencing medical gaslighting, which is when physicians downplay patients’ problems and attribute them to psychological issues.

It took a few more years before she finally got a tilt table test and was officially diagnosed with Chronic Fatigue Syndrome and POTS, Postural Orthostatic Tachycardia Syndrome.

What is POTS?

POTS is a common autonomic nervous system disorder, meaning it impacts your whole body.

It’s characterized by an excessively high heart rate and lightheadedness when someone stands, but symptoms can impact every system in the body.

Misdiagnoses are staggeringly common.

A 2021 studyfound that even though female patients with POTS experience more symptoms than male patients and are more likely to have comorbid accompanying conditions, it takes women on average 2 years longer to get a POTS diagnosis than it does for a man.

And that’s just on average-a UK-based study found an average of a 5-8 year diagnostic delay from symptom onset.

The Impacts of Sexism

Throughout history, women have been dismissed as hysterical and pathologized as mentally ill when suffering from chronic conditions.

Shannon Koplitz is the treasurer of Dysautonomia International, one of the main POTS advocacy groups.

“I am a dysautonomia, specifically, POTS patient of 18 and a half years. It took me six and a half years to be diagnosed. Many of those years I was dismissed as having psychiatric symptoms,” said Koplitz.

Conditions like POTS, Ehler Danlos Syndrome, endometriosis, Hashimoto’s disease, and others that impact primarily women slip through the cracks of the medical system when they aren’t taken seriously.

Patients report physicians having little awareness about these sorts of conditions, making them less likely to recognize and diagnose them.

Racial healthcare disparities

What’s more- dysautonomia symptoms have been stereotypically racialized and associated with young white women.

A 2019 study looked at the largest collection of POTS patients then recorded and found that 93% were white and 94% were female.

“It was historically thought of as a white women who were too anxious to stand up, or old ladies who stood too long in church,” explained Koplitz.

Koplitz says Dysautonomia International believes that this has led to even worse diagnostic delays and misdiagnoses for people of color in America, particularly Black women.

“We believe, though, that their access to health care is what is leading to extremely conservative or unrepresented numbers,” said Koplitz.

She says the organization is doing what they can to advance awareness throughout the medical community.

Across the Northwoods, POTS is an issue, with many people suffering without proper treatment and guidance.

“20-some years later, [I] can't say I'm any better and I'm actually worse than I was back then,” says Bognar.

Jody Bognar’s daily health struggles debilitate her, as well as an estimated 1 to 3 million Americans.

But every day she, and so many others, rise to face their condition.

This is part one of a three-part series called Falling Short: POTS Treatment in the Northwoods.

Hannah Davis-Reid is a WXPR Reporter.
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