As an early Microsoft employee in Seattle, Janet Church “ran hard,” often sleeping on her office futon, fueling on adrenaline and later opting to launch her own business instead of starting a family. That first generation of tech employees, she says, was “creating something exciting and we took the ride.”

So when Church, now a 55-year-old consultant and software company owner in Sonoma, California, started feeling increasingly drained and couldn’t seem to shake recurrent sinus infections, she chalked it up to stress. “I thought: ‘I’m just severely burned out,'” she says.

But even after selling her business in 2001 to rest, Church wasn’t better; she was worse. She continued to battle sinus problems, dry eyes and mouth, debilitating headaches and joint and muscle pain, but received disjointed answers from doctors. It wasn’t until she spent a month in the hospital with meningitis in late 2004 that she was referred to a rheumatologist — essentially the only type of specialist she hadn’t yet seen — who diagnosed her with Sjogren’s syndrome, an autoimmune condition that mostly impairs the tear and salivary glands but can affect many other parts of the body as well.

“The very first feeling you get [after a diagnosis] is relief — ‘Oh great, you know what this is; it can be fixed,'” remembers Church, who had never heard of Sjogren’s before.

[See: 5 Rare Diseases You’ve Never Heard Of (Until Now).]

But she soon realized it wasn’t — and isn’t — that easy. Sjogren’s syndrome, which seems to be at least part genetic and part environmentally triggered, doesn’t have a cure and, if left untreated, can affect many organs and body systems, including the thyroid, kidneys, liver, lungs, skin and nerves. Some people lose their teeth, develop mouth sores and can’t swallow fully; others may develop lung fibrosis or kidney failure. In about 5 percent of cases, patients develop lymphoma.

“You think, ‘I’m going to do everything I can do to get in remission — and it just doesn’t work like that,” Church says. “[It’s] an emotional roller coaster of how to get yourself back to who you are and to do the things that you love.”

A “Nuisance” No More

Sjogren’s syndrome, which often accompanies other autoimmune conditions like lupus and rheumatoid arthritis, affects nearly 4 million Americans, most of them women, making it one of most common autoimmune diseases, according to the Sjogren’s Syndrome Foundation. (Rheumatoid arthritis, by comparison, affects more than 1.3 million Americans, according to the American College of Rheumatology.) But in part because people with Sjogren’s often look healthy and typically experience ubiquitous, nonspecific symptoms like dry eyes, pain and fatigue, it’s often overlooked and misdiagnosed even by rheumatologists, many of whom learned in their training that the disease is no more serious than a “nuisance,” says Dr. Nancy Carteron, a rheumatologist in San Francisco who chairs the Sjogren’s Syndrome Foundation’s medical and scientific advisory board. As a result, it takes an average of three years for patients to receive an accurate diagnosis, the foundation reports.

[See: 10 Seemingly Innocent Symptoms You Shouldn’t Ignore.]

“They start complaining of dry eye, dry mouth, joint paint, fatigue — it’s just that when women complain so badly, [they] get labeled with fibromyalgia [or] craziness” until, years later, they develop serious complications, says Dr. Esen Akpek, an ophthalmology professor at the Johns Hopkins University School of Medicine and team member at the Johns Hopkins Jerome L. Greene Sjogren’s Syndrome Center. “At the end, we are able to diagnose, but by then, patients are irreparably damaged.”

That may be slowly changing, however, as improved diagnostic tests and treatments emerge. For example, Bausch + Lomb recently released a simple but imperfect skin prick test that eye doctors can use to help identify people who might have Sjogren’s among those who have more run-of-the-mill dry eye. “Any patient that has bad enough dry eye should be suspected of having Sjogren’s,” she says, “and something should be done.”

That something could be anything from eye drops to relieve dry eye and medications to stimulate saliva flow to steroids and anti-inflammatory drugs to manage lung and kidney complications. Most Sjogren’s patients see four to five different specialists — including dentists, physical therapists and OB-GYNs — annually and take almost nine medications for their condition, the Sjogren’s Syndrome Foundation found in a recent survey of nearly 3,000 patients.

Church, for one, takes Plaquenil, a relatively low-risk immunosuppressant that’s also used to treat other autoimmune conditions like lupus and arthritis. Last year, she tried biologics, which are being increasingly tested as treatments for Sjogren’s, Carteron says. “Most of the drugs in trials now are targeted at some of the same check-point pathways that immuno-oncologists are working on in cancer,” she says. “They’re basically blockers that either step on the pedal to increase the risk response to some pathway or step on the brake to slow it down.”

Leaving a “Bit of Your Life Unlived”

Much of living with Sjogren’s, however, comes down to mindset and lifestyle shifts. “Effective [treatment] does not mean you’re living the life you were without [the disease],” says Church, who still deals with chronic pain, fatigue and brain fog regularly. “That’s the most challenging thing.” Indeed, the survey found that 71 percent of patients say the condition interferes with the things they need to do each day; most also report making changes to their work or careers and home life to better cope. Seventy-four percent also said the condition adds a “significant emotional burden” to their lives.

“It’s harder than a broken bone, harder than a cancer diagnosis because other people — your family, friends and coworkers — understand those illnesses better,” Carteron says. “They don’t understand how someone can feel so awful and still look OK.”

That’s why Church surrounds herself with supportive friends and colleagues, moved to a beautiful part of the country, established a career she can perform remotely and does her best to manage stress to reduce the risk of flare-ups. She also satisfies her leadership drive by volunteering with the Sjogren’s Syndrome Foundation, for which she frequently speaks, and blogs about her condition at Sjogren’sLife. “I try to fill myself with deeper connections to people,” she says.

[See: 9 Ways to Boost Your Immune System.]

Church also knows how and when to say “no” to save her energy. “Over the years, you learn where your boundary is,” she says. “If you don’t push up to that line, you leave a little bit of your life unlived, but if you push over it too often, you also leave it unlived because you’re in bed.”

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Sjogren’s Syndrome: The Most Common Autoimmune Condition You’ve Never Heard Of originally appeared on usnews.com