Millions of women who look perfectly healthy on the outside are grappling with chronic conditions that make “normal” life anything but. This is what it’s really like to have an invisible illness.
It's rare to see Carol Head, a longtime nonprofit executive, without her signature accessory: a sleek, black Fitbit. Like many health-conscious, goal-oriented women, Head relies on the tracker to count her steps—but it’s not because she’s trying to get more exercise. She wants to make sure she doesn’t get too much of it.
“I keep my steps under 4,000 a day,” she says. “I’d love to walk the five blocks to Starbucks on a beautiful afternoon, but if I exceed my threshold, I’ll have a hard time functioning at work the next day.”
Head, 64, is one of the estimated 2.5 million Americans with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome (ME/CFS). And she’s grateful she can work at all. Some of the women she’s met in her role as president and CEO of the Solve ME/CFS Initiative have been housebound for months, or even years, at a time—in part because their vague, complex, and frustrating symptoms have been down- played, misdiagnosed, or ignored by medical providers.
For more stories about women living with Invisible Illnesses, check out our new series Life Interrupted: Living With an Invisible Illness.
ME/CFS is one of a dozen or more “invisible illnesses”—such as Lyme disease, lupus, fibromyalgia, and Crohn’s disease—that tend to strike women more frequently than men. “There’s no strict medical definition, but invisible illnesses are diseases that affect a person’s ability to conduct her life as she’d like to but that you can’t ‘see,’ ” explains Head. “People with these conditions often seem fine, and that creates all sorts of additional challenges, like being harassed for using a handicapped parking space or struggling to make friends understand the effort it takes to simply go out to dinner.”
Taylor Brune, a 27-year-old medical assistant and premed student who has type 1 diabetes, Lyme disease, and the auto- immune disorder Hashimoto’s thyroiditis, says people tell her that she’s too young or looks too healthy to truly be sick. “These misconceptions are disheartening because not only are we suffering the symptoms, but we also have to then defend ourselves or try to prove to others that we are ill—and that only creates more stress and sickness.”
Unfortunately, many invisible illnesses cannot be diagnosed by a simple blood test or tissue biopsy. And many have subjective symptoms, like fatigue, headaches, and body pain, that could be associated with hundreds of different medical conditions. “In lupus, for example, diagnosis is a challenge because there are so many ways it can manifest, and the symptoms may not necessarily happen all at once,” explains Sara Tedeschi, MD, MPH, a rheumatologist
at Brigham and Women’s Hospital and Harvard Medical School, and a member of the Lupus Foundation of America’s Medical Scientific Advisory Council. “Sometimes women see multiple clinicians over many years before someone starts to put the clues together.”
That was certainly the case for Taylor Leddin, 24, a public relations associate who waited 10 years to find out what was going on with her health. “I saw my general physician at first and was diagnosed with depression,” she recalls. “That wasn’t necessarily incorrect; it just wasn’t the full story,” she says. “When I began having more intense pain and fatigue, coupled with exhaustion from the littlest bit of exertion, I went back and [he] ran a few tests and referred me to a rheumatologist.” After three doctors and a nurse practitioner, pain testing, and multiple in-depth talks about symptoms, Leddin was finally diagnosed with fibromyalgia, a chronic, progressive inflammatory disease.
The gender factor
The reality that many invisible illnesses disproportionately affect women creates another, unique obstacle for patients: differences in the way female and male patients are treated. One study from the Hospital of the University of Pennsylvania found that women had to wait longer to be given pain meds in the ER than men.
In a seminal paper published in the Journal of Law, Medicine & Ethics, two researchers from the University of Maryland— one a lawyer, the other a PhD-level nurse—concluded that women are often “portrayed as hysterical or emotional”
in medical circles, and that doctors find women to have more “psychosomatic” illnesses and “complaints due to emotional factors” than men.
Take Brune, for example, who went to see her doctor almost a dozen times over a few months, complaining of fatigue, moodiness, and unexplained weight loss. “She brushed me off and, ultimately, sent me to a psychiatrist for a Zoloft prescription,” says Brune. “What was really happening was that my pancreas wasn’t working. I ended up in intensive care with life-threatening diabetic ketoacidosis.” It took a literal brush with death for Brune to be taken seriously and correctly diagnosed.
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Even Head, who makes her living as a professional advocate for an invisible-illness organization, still has to contend with ignorance, judgment, and stigma sometimes. “Three years ago, I chose a new primary care doctor,” she recalls. “It was
my first appointment, and she was taking a full medical history. Toward the end of the appointment, I told her that although I was in fairly good health in other ways, the dominant medical issue of my life was myalgic encephalomyelitis. She literally rolled her eyes and said, ‘I don’t believe in that.’ ” Head did her best to calmly offer the doctor a few educational references—then found herself a new physician.
How to cope
Every patient and doctor that we spoke to said that women with invisible illnesses must be their own advocates. If something seems “off,” don’t ignore it. Saakshi Khattri, MD, a dermatologist and rheumatologist at the Icahn School of Medicine at Mount Sinai in New York City, recommends keeping track of symptoms. “Recording specifics in a diary is always a good idea, especially making note of the location of pain if you have it.” Duration of symptoms and the circumstances around which they occur is important, too, adds Dr. Tedeschi. “For example, if your symptoms flare up when you also have an infection like a cold or UTI, that’s useful information,” she explains.
As you start to see doctors, compile your records. “Request copies not just of the clinical notes from your appointments, but also lab results and imaging studies,” says Dr. Tedeschi. “When you’re going to see a specialist, send them to the doctor ahead of time.”
Diagnosing an invisible illness can be like piecing together a complicated puzzle—the more pieces you have, the more complete the picture.
Getting there might take second opinions, Brune says: “If someone dismisses you, find another doctor to examine you and run the labs you need to get answers.”
To track down good local physicians, Leddin suggests checking out message boards and forums. “See if there are people in your area dealing with the same symptoms. Ask if they have a doctor that they would recommend you talk with.”
You can use the internet to gather facts too. Sure, there’s bad health advice online, but there is also solid data. Focus on content published by large medical schools and research universities, such as the Mayo Clinic and the Cleveland Clinic; government health sites like cdc.gov or nih.gov; and nonprofit advocacy sites.
When it comes time to tell coworkers and family and friends about your health, have those conversations face-to- face. If symptoms like fatigue, pain, weakness, sleep disturbances, and others are slowing you down, the people around you may judge you as “unreliable,” says Head. You can’t control what they think, but you can educate them and offer to answer their questions. “Say, ‘Let’s sit down—I need a half hour to talk through what is happening with me because I want you to understand.’ ” Keeping your struggles a secret is tempting, says Head, but speaking your truth is freeing and can ultimately help your relationships.
It’s also worth connecting with people who understand your experience without any explanation. “Find online communities around your condition,” suggests Dr. Khattri. “Just interacting with others who have what you have can make you feel more empowered and hopeful.”
Strength in numbers
Check out the following for first-person accounts, because it always helps to know you’re not alone.
In her weekly podcast, 36-year-old actor and activist Lauren Freedman— who has sleep disorders and Hashimoto’s—talks to other members of the invisible-illness community about coping with these conditions. “Creating Uninvisible has been a huge part of the healing process for me. If I can help one person more easily access useful resources, then I’ve done my job.”
Norman’s memoir describes how, in 2010, she was suddenly bedridden with a strange and painful illness that her doctors insisted was a UTI. After years of suffering in silence, she educated herself by reading up on her symptoms in the medical library of the hospital where she worked, and finally learned what was actually wrong.
This initiative centers around chronic fatigue syndrome. Its helpful companion site features personal photographs and truly candid, inspiring anecdotes from more than 170 men and women who have the disease. Get a peek into what life is like for them by heading to homecfs.solvecfs.org.
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