Justin Raczynski measures out his days like an accountant working up a budget.

He has a finite amount of physical energy to expend. Each action he takes costs him a certain sum, a “credit” he calls it.

“You only have this (limited) portion of energy for the day,” he says. “If I want to have a shower and eat, that’s two credits. If I want to be social at all, that’s another credit.”

In all, Raczynski says, he has about five credits per day.

If he overspends his credits, he might pass out. And he’ll almost certainly spend the next two days recovering, practically bedridden.

Raczynski, 21, suffers from Postural Orthostatic Tachycardia Syndrome (POTS). In the simplest terms, it means his body doesn’t circulate blood properly when he stands up, resulting in blackouts, “brain fog,” severe fatigue and a host of other symptoms.

POTS is a form of dysautonomia, a malfunction of the basic acts the human body performs without us consciously thinking about them, like regulating heart rate, pumping blood throughout the body, breathing, sweating, digesting.

“POTS is a vicious cycle,” says Dr. Juan Guzman, one of the few doctors in Ontario who specializes in diagnosing and treating the condition. “You get really tired or fatigued when you stand up, but the longer you stay in bed or inactive, the worse the symptoms are going to get.”

Canadian health authorities do not track the prevalence of POTS. Guzman, who works at Hamilton General Hospital and teaches at McMaster University, estimates there are 40,000 to 50,000 sufferers in Canada, based on the number of cases in the U.S. Most of those he has seen are between the ages of 14 and 35, and the majority are girls or women.

People with POTS often suffer from a combination of other health problems, particularly with their bodies’ connective tissues.

That layering of illnesses, the broad set of symptoms and a general lack of awareness of POTS among doctors make it difficult to diagnose, Guzman says.

Guzman says patients can “get stuck” during the diagnostics process because their family physician is “not aware of all the possibilities.”

Patients report being misdiagnosed, treated for illnesses they did not have, even told the symptoms were all in their head, because their doctors did not recognize the condition.

“The sad reality is these kids, and it’s mostly girls who are afflicted, are dismissed simply because of their age and gender,” says Diane Patterson. “It’s easy to say, ‘Oh it’s just a melodramatic teen.’ ”

Her daughter was diagnosed in August with Orthostatic Intolerance, a condition that can be an indication of POTS, and which, like POTS, can cause loss of consciousness, fatigue, digestive and cognitive problems.

Patterson says her daughter, now 15, went through a slow decline in health for years.

“She was like a deflating balloon,” says Patterson. “We lost a couple of drops out of her every year.”

Gradually she dropped the staples of her active childhood one by one. Soccer, cheerleading, bike riding. Each one fell by the wayside as she lost more and more energy.

“My grandmother died at 93 years old and even she had more energy than my daughter,” says Patterson.

In 2015, Patterson began taking her daughter to doctors in their hometown of London, Ont., in Hamilton, in Toronto. She estimates there were about 50 appointments and tests in all, in little more than a year.

Multiple doctors told Patterson her daughter was suffering from mental health issues, not physical ailments.

Patterson says it seemed like they had formulated that opinion before her daughter even walked through the door.

“You’re going in there with legitimate physical symptoms and you’re getting questions like ‘What’s going on at home?’ or ‘Anything stressing you out right now?’”

This summer, with help from the Ontario Ministry of Health, Patterson took her daughter to the Mayo Clinic, where she was diagnosed with orthostatic intolerance and other conditions, including the connective tissue-related Ehlers-Danlos Syndrome.

Raczynski’s path to diagnosis was no easier.

The Bradford, Ont., native has been passing out, sometimes multiple times a day, since he was three years old. His complexion would turn grey, his body would go limp.

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For years, doctors cycled through diagnoses trying to explain it.

“We had multiple trips to doctors, multiple ER visits,” says Justin’s mother Heather Raczynski. “Sometimes we were even actually scolded for bringing him in (but) we just knew something big was going on. He just looked too sick.”

When he was about five they said it was epilepsy and put him on a constantly changing regimen of medications.

Around 11, he was told by doctors it wasn’t epilepsy but migraines. New diagnosis, new medications. No change to symptoms.

By Raczynski’s early adolescence, doctors were saying his problems were psychological.

“Somehow they decided maybe it was a behaviour, not a physical issue,” says Heather.

Finally, when Raczynski was 16, a rheumatologist determined he might have Marfan syndrome — an inherited connective tissue disorder, sufferers of which are often very tall, with disproportionately long limbs, like Raczynski.

Then a neurologist the Raczynskis were consulting looked up Marfan’s syndrome and saw dysautonomia often accompanied it.

He referred Justin to Guzman, who diagnosed him with POTS.

Raczynski is now on medication for the condition, as well as his other health issues. He still suffers from severe fatigue. He still has to carefully track his energy use and prioritize some activities over others.

He spent a year studying at the University of Guelph on a reduced course load but had to quit when it became too much for his body to handle.

Raczynski says he’s “light years ahead” of where he was a few years ago, though.

Heather Raczynski says she’d like to think awareness for POTS is growing in the medical community.

“Hopefully the next guy will have a wee bit of an easier road, with more awareness and more doctors knowing about it,” she says.

Guzman says specialists and primary care physicians, like family doctors, are starting to learn more about POTS.

“The public needs to know that there is a possibility (of POTS),” he says. “It’s also important the diagnosis is made by someone who is able to make that call. The primary care physicians have an important role making those changes.”