One summer morning in 2009, Michael Blaney woke up in a new body. At least, that’s how it felt. The rising college senior had gone to bed a long-distance runner who was healthy outside of frequent migraines and awoke a disoriented, exhausted young man who felt nauseous after just 15 minutes at the gym. “That was the day everything changed in my life,” recalls Blaney, now a 28-year-old graphic designer in Chicago.

It took more than three years, countless visits to medical specialists, five ineffective medications and one year off school before Blaney learned the name of his condition: Postural Orthostatic Tachycardia Syndrome, or POTS. “It was basically the first time [I’d heard of it,]” he says.

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Many people still haven’t. The reasons are understandable: The chronic condition — in which the autonomic nervous system sends faulty signals to blood vessels, causing them to transport blood to the wrong places at the wrong times — manifests for unknown reasons and differently in everyone, and is readily misdiagnosed as anxiety or exhaustion. “One of the problems is that it’s a bit nebulous,” says Dr. Satish Raj, associate professor of cardiac sciences at the University of Calgary in Canada, where he studies POTS and treats people with the condition.

The hallmark feature, however, is a sharp rise in heart rate upon standing, which causes people with POTS to often feel dizzy, faint, disoriented and nauseous when they get up. “It really isn’t a big task in healthy people to stand up, but in people with POTS, these mechanisms are not functioning appropriately,” explains Dr. Svetlana Blitshteyn, clinical assistant professor of neurology at the University of Buffalo School of Medicine and Biomedical Sciences, where she directs the Dysautonomia Clinic.

But describing the condition, which largely affects adolescent girls and premenopausal women, as nothing more than difficulty standing up diminishes its often debilitating impact on all areas of patients’ lives — from their sleep habits and digestion to their careers and relationships, clinicians and patients say. For Blaney, chores like groceries and the laundry are too exhausting to schedule on the same day, and an office job requiring commuting is out of the question. “I don’t think there’s a moment in my life that’s not affected by it,” he says.

A ‘Hot Potato’ Diagnosis

By the time Blaney learned he had POTS, he had seen two general practitioners, two ophthalmologists, two migraine specialists, one headache expert, one internal medicine physician, two gastroenterologists, two psychiatrists and one alternative medicine doctor. Such a long and winding road to an accurate diagnosis is typical. In fact, one survey of more than 3,000 patients with POTS found that, on average, people saw seven doctors and waited more than four years before hearing the term applied to them, and nearly one-quarter saw 10 physicians or more. “You don’t have to talk long before people will complain or express frustration that their doctor doesn’t know anything about this,” says Raj, the medical director of the Calgary Autonomic Investigation & Management Clinic who led the survey along with colleagues at the University of Calgary’s Libin Cardiovascular Institute, Vanderbilt University’s Autonomic Dysfunction Center and Dysautonomia International, a nonprofit that promotes awareness of and research for autonomic disorders.

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But their doctors aren’t necessarily to blame. Since POTS is fundamentally a problem of the autonomic nervous system — which controls involuntary functions such as breathing, heart rate and digestion — its symptoms can manifest in many body parts while physical exams of each part don’t raise flags. “Each piece of their body looks fine and can work fine, but the body has lost the ability to work together fluidly,” explains Dr. Philip Fischer, a pediatrician at the Mayo Clinic in Rochester, Minnesota, where he studies and treats children and young adults with POTS.

Many of the physicians who work with POTS patients — Fischer included — never intended to specialize in the condition but rather came to it after seeing enough patients with similar features but no explanation. Patients, on the other hand, end up bouncing between specialists such as cardiologists for fainting spells, neurologists for migraines and mental health professionals for what seem like panic attacks. Meanwhile, primary care doctors and emergency room physicians often find nothing to worry about. “It’s like passing a hot potato,” says Kelly Tucker, executive director of the Dysautonomia Information Network, an organization that aggregates resources on conditions of the autonomic nervous system, including POTS.

And once patients do land a correct diagnosis — typically determined by a “tilt table test” that measures the change in heart rate and blood pressure as patients go from lying down to upright — it’s not uncommon for them to wait a year to see a physician well-versed in POTS. “Once you get the diagnosis, it’s almost a relief because some of them have battled for so long,” says Tucker, whose 13-year-old daughter has POTS. Only then, she adds, they “find out they have a new battle to get care.” (Her organization aims to make the process easier by maintaining a list of physicians who see patients with the condition.)

The cause of POTS is no more straightforward than its diagnosis. While there seem to be hormonal, genetic and potentially autoimmune components, “in most individual patients, we can’t point and say, ‘This is what caused it in you,'” Raj says. Doctors can, however, see patterns among their patients with POTS. Many meet diagnostic criteria for other conditions including migraines, chronic fatigue syndrome, fibromyalgia and autoimmune disorders like Hashimoto’s disease and rheumatoid arthritis. A lot of people with POTS are highly flexible, too, perhaps an outer reflection of what’s going on with their blood vessels, which have trouble tightening, Fischer theorizes.

There are also similarities in how and when POTS onsets. Most adolescents Fischer sees, for instance, are high-achieving, healthy teens who get hit with some other condition — be it mono or a concussion — and then never get better. Among adults, the condition is often similarly triggered, albeit more likely by something like pregnancy or the flu. “It’s that perfect storm of a bunch of things that make it more likely that people get tipped into this,” Fischer says.

Life With POTS

There is some good news about POTS: Although it’s a chronic condition and doesn’t seem to be curable, it can be managed with treatment. “I have patients who are on disability, and I have other patients who are doctors, lawyers, teachers … people that lead very productive lives,” Raj says. “There’s a spectrum, and people do get better with treatment.” For pediatric patients, the future appears even brighter, Fischer says. “Most of them do a lot better in life with care [and] then end up outgrowing it completely,” he says.

While treatment regimens vary widely, almost everyone with POTS is encouraged to drink plenty of fluids and add more salt to their diets to increase blood volume and pressure. Exercise is “vitally important” too, since it seems to help train the blood vessels to pump correctly again, Fischer says. While patients who are faring well report that exercise was one of the most helpful remedies, Fischer says, physical activity can feel especially daunting to people with POTS. “If you can only do five minutes of yoga, you do five minutes of yoga,” Blaney’s learned.

Medications can help, too, although there are no drugs specifically approved to treat POTS; all are used off-label to treat the condition’s symptoms. Tucker’s daughter, for instance, is taking one drug to prevent migraines, one to prevent nausea, one to increase blood pressure and one to decrease heart rate. “You’re adding one to fight the other and for some people, none of them work,” she says. The long-term goal, Raj says, is to identify various subtypes of POTS to better target treatments. “There’s obviously a lot we don’t know and we’re still trying to understand,” he says.

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There’s one factor, however, that’s clearly key for everyone with POTS: support. Achieving it, though, can be difficult since many people — physicians included — have never heard of POTS and those with the condition. “It’s an invisible illness,” Blaney says. “You could be surrounded by people with POTS and you would have no idea.” Young and middle-aged women with the condition — the majority of patients — are particularly at risk for getting dismissed since their problems are often blamed on PMS, anxiety or new mom fatigue, Blitshteyn says. “It doesn’t do any service to anyone if we dismiss them as anxious women or [say,] ‘It’s all in your head,'” she says.

For Blaney, who recently started taking a drug that helps by affecting nerve impulses to muscles, patience has been a vital coping mechanism. It’s taken his parents, for example, years to remember they should drop him off at a restaurant before finding parking, and it’s even taken him “a lot of time” to adjust to his new self. While he can no longer go for a long run along Chicago’s Lake Shore Drive or spend an afternoon shooting hoops with his brother, for instance, Blaney’s learned to embrace other outlets for stress like meditation and listening to music. Not being the same as he once was, he says, “is not going to be the reason why I’m unhappy.”

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What Is POTS and Why Haven’t More People Heard of It? originally appeared on usnews.com