During a recent walk in the woods, Stephanie Tait moved slowly, leaning into her cane when necessary, and pausing to take a break every few steps.
She is 34 years old.
Tait, a mother of two in Salem, Oregon, was diagnosed with Lyme disease in 2016. Since she was a teenager, she’s struggled with multiple health issues that she now believes are a direct result of not getting diagnosed with the disease sooner: chronic fatigue, arthritis, memory issues, joint pain and more.
She is one of countless women who reported to TODAY.com, they had to fight for a diagnosis — of Lyme or otherwise — often insisting upon tests that doctors said were unnecessary, or leaving appointments feeling as though their symptoms had not been heard or taken seriously.
For women who have Lyme disease, the struggle can be especially difficult, given the complicated nature of the disease.
"The problem with Lyme disease is that there are so many different strains," said Dr. Andrea Gaito, a New Jersey-based rheumatologist who specializes in treating Lyme disease. "One person can have it and have headaches, someone else can have joint pain, someone else can have palpitations. And none of these are specific to Lyme. There's no Lyme test that's 100% accurate. Unless you have a tick in a baggie, literally, and a bulls-eye rash, there's sometimes a delay in diagnosis."
A Long Journey of Pain and Misdiagnosis
Tait estimates that she had Lyme for about 15 years before she was diagnosed. She thinks she was bitten by a tick as a teen in California’s Bay Area, where she grew up. In high school, she was a dancer. Suddenly she was getting injured more than usual — joints coming out of their sockets and ligaments tearing after doing normal routines. During class, she was exhausted and having trouble concentrating. Her grades started to slip.
“Looking back, it’s now clear I was neurologically starting to not be myself,” she said. “But when you’re a teenager, a lot of it is just attributed to, ‘You’re a teenager!’”
Tait, who was thin with a bubbly personality, recalled one doctor telling her she was “too pretty to be sick.”
Eventually she was diagnosed with depression and prescribed an antidepressant.
In college, Tait started to experience seizures and was diagnosed with epilepsy.
“My fatigue was getting worse,” she said. “I was dropping out of classes left and right and I would get sick constantly. That’s where this weird sort of self-fulfilling prophecy came in: I was depressed. But I wasn’t sick because I was depressed. I was depressed because I was sick.”
“But once they put epilepsy down (on my chart), at least I had turned a corner where they had a label on something,” Tait continued. “Then (my doctors) would just add things — ‘You have fibromyalgia and you probably also have chronic fatigue syndrome.’ But they didn’t tell me how to fix it. Everything was, ‘Try antidepressants because we don’t really know.’”
She got married and after several miscarriages, gave birth to two sons. Throughout the years, Tait received various diagnoses and was prescribed multiple medications, but nothing made her completely healthy. She was still sick.
Why Is Lyme Disease So Difficult to Diagnose?
Lyme disease is a bacterial infection transmitted through the bite of infected deer ticks. One common symptom of Lyme is a red rash on the skin (often called a bulls-eye rash, although the rash doesn’t always have a ring-within-a-ring appearance), that appears at the site of a tick bite usually within a week, but up to a month later. Some people may not experience a rash, or may mistake it for a spider bite. Other symptoms like fever, chills, headache, fatigue, joint aches and swollen lymph nodes may occur in the absence of a rash, according to the Centers for Disease Control and Prevention.
If Lyme is not diagnosed immediately, the bacteria start to spread to other parts of the body — the joints, the nervous system and the heart. Eventually, arthritis sets in, along with extreme fatigue and general aches and pains. These can also be symptoms of other conditions, which is part of the reason why Lyme is difficult to diagnose. Aside from the initial rash, there are no symptoms that are specifically indicative of Lyme disease.
There’s also no definitive way to test for Lyme disease. There is no direct blood test for the bacteria that causes Lyme. Doctors have to rely on antibody tests, which merely measure the immune system’s response to the bacteria. Further complicating matters, studies have shown that those tests aren’t always accurate and can have poor sensitivity and false results in some cases.
“Antibody tests are indirect tests,” said Dr. John Aucott, director of the Johns Hopkins Lyme Disease Clinical Research Center in Baltimore, Maryland. “They only measure whether the person has been exposed to the infection, but it doesn’t tell you if that exposure was six months ago or six years ago. And the test for exposure doesn’t tell you if you still have an active infection. What we want is a direct test that actually measures the presence of the bacteria. Like you would get if you had a urine culture for a urinary infection.”
Until a foolproof test exists, diagnosing Lyme disease, especially late-stage Lyme, is an imperfect science.
How Stephanie got answers
About four years ago, Tait started to suspect she had Lyme disease. A family friend had Lyme, and Tait recognized some of her own symptoms appearing in her friend. She asked her doctor for an ELISA, an enzyme-linked immunosorbent assay, or a blood test that’s typically the first way doctors test patients who may have Lyme disease. When she learned her insurance wouldn’t cover the cost, she paid for the test out of pocket. It came back negative.
Tait, however, wasn’t convinced. She asked for another test, but she said the doctor refused. So she turned to a private lab for a second test, this one a Western Blot, which doctors typically turn to next, to verify a positive ELISA result. That test was positive for the Lyme antibodies.
“I sobbed, because there it was in my hands that I wasn’t just jumping to conclusions,” Tait said. “I walked back into my doctor’s office and said, ‘Here it is.’ They said, ‘Well, we didn’t do this test, so how do we know?’ I said, ‘You’ve got to be kidding me. I have a lab test!’”
Tait started getting treatment at a private clinic in Idaho that specializes in treating Lyme disease, about a six-hour drive from where she lives.
Lyme disease is typically treated with antibiotics, and when treated early, people with Lyme usually recover completely. Tait’s treatment plan included antibiotics, immunotherapy, various supplements as well as dietary changes. But because she had been sick for so long, some of her health problems were irreversible.
“Ultimately, no matter how much work you do to treat Lyme, when you’ve had it for 15 years, that’s bacteria that’s just growing and growing and taking over in your system,” she said. “Some of that damage is just not fixable.”
Today she has heart damage and chronic joint pain and arthritis, as well as aphasia, a language disorder that affects her ability to speak at times. Her home is outfitted with tools that make living with chronic pain and fatigue more bearable — there’s a stool in her shower and a gadget on her bathroom mirror that holds her hair dryer so her arms don’t get tired. There are smart devices throughout her family’s home. Every morning, Amazon's Alexa tells her two sons when it’s time to put their backpacks on and head to the bus stop, just in case Tait isn’t able to get out of bed and see them off. Heating blankets are tucked into nooks in every room.
There are plants throughout the home — all of them are fake, because taking care of real plants requires energy she cannot spare.
“On a day-to-day basis, I can walk around now and masquerade pretty well as a perfectly healthy person,” she said. “If you didn’t know me, you often wouldn’t know.”
Tait believes that she would have been diagnosed sooner had she been a man. And many women told TODAY they felt the same way about their own experiences.
“So much of why they missed the connections between symptoms for so long absolutely has to do with my gender,” Tait said. “My husband’s been sick. My husband’s been to the ER. He’s feeling run down and more fatigued these days. And not once they do they ever suggest, ‘Let’s look at your mental health first.’ But I can recount half a dozen times that I was in an emergency room for pain, for something serious, and suddenly someone would come walking into my room and introduce themselves as psych.”
“A lot of (the response I got to) fatigue was, ‘Well, yes, you’re a mommy, so of course you have fatigue.’ And I’m trying to talk about (how) I can’t get out of bed four days a week. And it was still, ‘Well, have you tried another cup of coffee in the morning?’ Nobody says that to my husband.”
Many Lyme patients have had similar experiences. Lisa Mullen, who lives in a suburb outside of Chicago and was diagnosed with Lyme disease about three years ago, got used to doctors writing off her physical symptoms as stress and anxiety. She recalled one female doctor who suggested she get a puppy.
Bonnie Murch of Westfield, New Jersey, started keeping a daily log of her changing symptoms when no one could figure out what was wrong with her in the early ’90s. She was misdiagnosed with the flu, chronic fatigue, fibromyalgia and depression for years before a doctor correctly diagnosed her with Lyme disease.
In 2004, when Jane VanDerburgh of Biddeford, Maine, was 35 years old and came down with severe flu-like symptoms and a swollen, red breast, her doctor told her she probably had mastitis and sent her to a rheumatologist, who misdiagnosed her with early menopause and depression. Two years later, she said an infectious disease specialist in Boston diagnosed her with Lyme disease. Today she wonders if her inflamed breast was an early symptom.
Moving Forward With Chronic Illness
Today Tait works as a writer and speaker. Her first book publishing in August, “The View from Rock Bottom: Discovering God’s Embrace in our Pain,” chronicles her journey with her health and how it impacted her faith. Writing gives her the freedom to work from home, but she's well aware that for many years the financial burden has been on her husband, a software developer.
They recently took a rare vacation to Mexico. It was the first time they’d been on a plane together since their honeymoon more than a decade ago.
Tait has days when she feels strong enough to attend a speaking engagement at a church or play with her kids at the park. But she also has days when she struggles to move her body and relies on her cane.
For Tait, the hardest part is knowing that she would, in all likelihood, be completely healthy today had she just been diagnosed sooner. And the scariest part is knowing that it was all out of her hands.
“I was asking for the right tests. I was saying the right things. I was showing up constantly and saying, ‘This isn’t working, I’m not well.’ But eventually you start to doubt yourself, when you hear enough times that maybe it’s all in your head.”
Now that she has answers, she can at least begin to move forward.
“I think when you do get a diagnosis, it gives you permission to go, OK, there’s something. It’s real. I don’t need to keep banging my head at the wall, trying to be normal," she said. "This is my life. I have a thing. I know that for sure now. What can I do to make that life livable, a Lyme disease life livable?”
This story first appeared on TODAY.com. More from TODAY: