One day two summers ago, I woke up with a headache behind my right eye and muscle pain in my legs and back. By the end of the day, everything hurt. My skin felt so sensitive I tried not to rest my arm on the table. I was 32 and had always been healthy. I assumed I’d get better in a week.
A month went by, and now I had a low-grade fever in addition to daily back and muscle pain. The fever returned at the same time every afternoon, escorted by a host of other strange symptoms: the bridge of my nose burned and swelled (I could no longer wear glasses), one knee and my jaw seemed to want to unhinge themselves, and I could suddenly, disconcertingly feel my urethra—a part of the body that is truly not meant to be felt, in my opinion, but which was now painfully swollen. My right hand sometimes hurt too much to use, and a deep ache radiated through my butt cheeks. (“You gotta admit, that one is kind of funny,” I said, immaturely, to my husband.)
After five months of daily fever and flu symptoms, I was so weak I struggled with stairs. I started spending a significant part of each day in bed. I still wasn’t sure what was wrong with me, but I knew it had to be something terrible. So why did test after test continue to come back negative? My primary doctor kept sending me to specialists, but, to my surprise, most of them seemed not to recognize my symptoms as indicating a specific condition.
I saw a range of experts including an endocrinologist, a neurologist, a rheumatologist, a gastroenterologist, an infectious diseases doctor, a urologist, a uro-gynecologist, and even someone called a “diagnostician.”
“Extremely general,” they said.
“Nebulous.”
“Systemic.”
They seemed rushed. They didn’t seem to have the time (or maybe interest) to investigate further.
“Sometimes these things just go away on their own,” one specialist told me, waving his hand vaguely. I hadn’t been able to get my daughters to school or pick them up in months. I was trying to focus on small victories, like walking from my bed to the couch. “I sat at the table for the whole dinner!” I wrote proudly in my journal after one particularly successful evening. A kind babysitter had cooked the meal. I felt worse whenever I ate.
“Take Advil,” I was told by several doctors in a row.
Staying sick as the seasons changed—sometimes housebound for a month at a time, then a little better, then sicker again—was surreal. I couldn’t bring myself to text my friends back anymore. What was there left to say? I had been paused. I hung there, suspended in time, turning gingerly over in my bed, as their busy and gloriously normal lives rushed into the future. I became desperate for an answer. Even if I never felt better, I needed to know what was wrong. How could something so debilitating be so mysterious?
And then, finally, my primary care doctor called with news. “I think you might have Lyme disease,” she told me. She had rerun a few tests, and the results were different now.
She called in a prescription for doxycycline, an antibiotic frequently used to combat early Lyme infection, and I will never forget her telling me, on that fateful day, that I could feel better in as little as a month.
I was flooded with hope. I was also confused. I didn’t know a lot about Lyme disease, but I did know that I’d already had it, as a kid. It had seemed much more straightforward then: easy to diagnose, easy to treat. Actually, playing outside in the fields behind our childhood yard in a marshy part of New Jersey, one of my brothers and I had both gotten the signature bull’s-eye rash. We took a standard course of antibiotics and got completely better. The sickness had barely registered; though I do remember the medicine being a delicious bubble-gum flavor. Now I was living in Brooklyn, and spent only a little time in parks and upstate. I hadn’t noticed any rashes or ticks. Also, my test results weren’t totally conclusive.
The Centers for Disease Control and Prevention (CDC) recommends a two-step approach for diagnosing Lyme disease, an infection caused by the bacterium Borrelia burgdorferi. First, a sensitive enzyme immunoassay (EIA) or immunofluorescence assay (IFA), both of which look for the presence of antibodies, or proteins the immune system produces in response to an antigen (a foreign substance in the body, such as a virus). Then—if that test result is unclear or is positive, which mine was—additional testing can come in the form of the Western immunoblot assay, which tests for immunoglobulin M (IgM) or immunoglobulin G (IgG) response antibodies. According to the CDC, a positive IgM result alone cannot confirm Lyme disease in someone who has had symptoms for over a month (as I had). Apparently, the chances of getting a false positive in that case are high. (False positives can happen for other reasons with Lyme tests, such as an infection with a different tick-borne illness. False negatives can also be a possibility, like if someone got infected too recently for antibodies to develop.)
In my case, the Western blot test showed a positive result for immunoglobulin M (IgM), which is designed to identify infection for up to 30 days after a tick bite, and a negative test result for immunoglobulin G (IgG), the part that measures longer-term infection. But, as I would soon learn, there is a lot of debate about what exactly this means.
I started my antibiotics, and while I was waiting for them to do something, I went on Instagram to learn about other people’s experiences with #lyme.
Immediately, I began to get a sense of a more complicated picture. Or pictures. Here were extremely ill people who were unable to leave bed and who had done years of antibiotics without improvement. Here were people who weren’t using antibiotics at all, but instead trying ozone therapy and cupping and bee stings. Here were people in wheelchairs and on oxygen and people doing yoga on mountaintops in the latest cute sports bras and matching pants. Many of these people defined their disease as “chronic Lyme,” a term which, the CDC website informed me, is often used to describe patients who have no diagnostic proof of ever having been infected with Borrelia burgdorferi. The cases I saw online sometimes seemed to fit the CDC’s description of “post-treatment Lyme disease syndrome,” which occurs when a person with a confirmed Lyme diagnosis doesn’t fully recover after standard two- to four-week antibiotic treatment. But I also saw plenty of people who identified their illness as Lyme despite never having gotten a positive on a Lyme test. Some of the people who seemed to have the most severe levels of disability listed Lyme as only one of their diagnoses. They also mentioned conditions I had never heard of, like dysautonomia, POTS, EDS, joint hypermobility, gastroparesis, and connective tissue disease.
There was pushback against some of the articles circulating about Lyme disease, including one in a prominent magazine that described Instagram influencers with Lyme. To me, the articles seemed to be making fun of the well-off, fashionable, and fitness-oriented women being interviewed, suggesting that they certainly didn’t seem sick, and that their illness was more an identity or lifestyle choice (like veganism) than a medical problem. The #Lyme community responded to these pieces with a kind of tired sadness. We are used to being treated like this, bloggers said. Even doctors dismiss us.
On Instagram, practically everyone posting under the hashtag for Lyme seemed to be of the opinion that the CDC was a big part of the problem. The CDC is woefully misinformed, if not outright hostile, toward people like us, self-identified Lyme warriors warned their followers. Here’s the truth: You won’t necessarily ever see a rash; a sizable percentage of Lyme patients never get one. You may not have any idea that you were bitten. A partial positive is still a positive. Even if you get antibiotics early, they may not be enough to cure you. This is not a straightforward disease: A lot of people never feel better.
My primary doctor sent me to another specialist to confirm her tentative diagnosis. When I lay on the table for the exam I had already had by then so many times, he startled me by yanking my shirt up and leaving my breasts exposed while he felt my stomach and listened to my lungs. After I pulled my own shirt down, he glanced over my chart and said without looking at me, “You don’t have Lyme disease.” He laughed to himself, but in a seemingly annoyed way. Then he explained the obvious to me: “You live in the city.” He added that it was possible I had “fibromyalgia-chronic-fatigue-syndrome,” making them one word—a term I already knew would lead nowhere as a diagnosis. He suggested I see a neurologist about the muscle spasms.
But the #chroniclyme people said this was a normal experience. Regular doctors don’t know anything about this disease. You need to find an expert, a “Lyme literate” doctor, or you will be sick like this for the rest of your life.
As I got more involved in the online world of women like me whose lives had been derailed by “nebulous,” “systemic” illnesses that mystified their doctors, I began to feel increasingly disturbed by the way that healthy people, including some reporters and doctors, seemed to feel comfortable passing judgment on who counted as truly sick and who was probably just exaggerating “for attention.” Trolls harassed participants on the Netflix show Afflicted, accusing them of lying, of being despicable hypochondriacs. Sick women regularly reported their own parents not believing them, their boyfriends breaking up with them, their friends falling away. They were traumatized by E.R. visits from which they were sent home during a terrifying health crisis with some Aleve. They were told over and over that they were actually completely fine.
“Listen,” one specialist said to me, “you’re young. You look good. You’re fine.” As though looking good must mean I felt good too.
“It might just clear up once your period stops,” another doctor, who examined me during my period said of the pelvic inflammation that by then made it impossible for me to wear jeans or sit comfortably.
One expert even told me I seemed “pent up, sexually,” that I was attractive, that my “mysterious” pelvic symptoms were most likely a manifestation of my need for control, and that I should have more sex.
Even some friends and family couldn’t always quite keep track of my strange illness. They suggested that I exercise more, continued to invite me to events long past the point where I could walk farther than a block or two, and asked well-meaning questions like, “Are you better yet?” I didn’t hold any of this against them, of course. It was a problem of context: There were simply no guidelines for this type of situation.
It seemed that the able-bodied world was not quite willing, or maybe not able, to believe sick people unless we had the “right” diagnosis, one that the medical community could easily and positively identify. But not every disease, I was learning, was so cooperative. Could it be that I had a disease that still existed in the gray areas of medicine? What if I had a disease that the CDC didn’t yet understand? Maybe the standard course of antibiotics wouldn’t be enough for me, either.
I made an appointment with a Lyme-literate doctor, wanting to be as thorough as possible. Like my primary doctor, this doctor was compassionate and seemed to care about my suffering. I am skeptical by nature, but illness often renders skepticism a luxury, and soon I began a complicated and expensive regimen of homeopathic tinctures and herbal supplements, all of which had to be taken in the right order, some several times a day, some on an empty stomach, some with food or three hours after eating. “This doesn’t seem like it could possibly work,” I told my husband, as I swallowed my latest dose of an amber-colored tincture. But what did I have to lose?
Quite a bit, it turns out.
For example, I stood to lose access to treatment that might actually work, and therefore months, potentially years, of my life.
After a month on doxy, and an additional month on supplements alone, I didn’t feel better in any significant way. Maybe the Lyme warriors were right and my disease had progressed too far to respond to the standard approach? I had found a doctor in another state who treated his suspected Lyme patients with expensive rounds of long-term IV antibiotics, but I couldn’t quite bring myself to sign up. Actually, I felt like I was back to square one: I still felt I didn’t know what was wrong, and I was increasingly afraid I never would.
As it turns out, I should have looked closer at the Lyme test itself. If I had read the fine print below my results, I would’ve seen this statement: “Sera from individuals with the following may crossreact in the Lyme Western Blot assays,” followed by a list of categories, including “connective autoimmune.”
In fact, a lot of the controversy and confusion about Lyme disease would be solved by a better test, one that measured the bacteria directly, rather than immune response to it. My rheumatologist later told me that false positives on the Lyme test are common in her patients; “patients like you” were the words she used. But I was sick for eight months before I even heard the word autoimmune used to describe symptoms like mine. It wasn’t at the doctor’s office but while reading Maya Dusenbery’s book Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick that I learned that, at some points in the United States, autoimmune diseases have been among the top 10 causes of death for women under 65. Someone in the #chronicillness community had recommended the book and I couldn’t put it down. I learned that some estimates indicate that autoimmune diseases affect more than 23.5 million people in the U.S., most of them women.
Autoimmune symptoms are often “nebulous” in that they involve the entire body. Some of the most common symptoms are muscle pain/weakness, joint pain, fatigue, and low-grade fever. Basically, the feeling of having a flu that never ends. So why hadn’t anyone mentioned the possibility that I might have an autoimmune disease?
Well, for one, autoimmune disease, despite having, of course, existed for as long as humans, is a relatively new medical concept. According to Dusenbery, it took until the 1990s for autoimmune disease to be recognized by the medical community as a major women’s health issue. It can take years to get an accurate autoimmune diagnosis.
The complex, comprehensive nature of many autoimmune conditions may contribute to difficulty diagnosing them. And the cyclicality of autoimmune symptoms (consisting of “flares” that can sometimes last for months, followed by periods of relatively improved health) can lead to speculation among the uninformed that the cause must be psychological. After all, how can someone who is truly ill become suddenly better, then sick again, indefinitely?
Then there’s another problem: a long history of disbelieving women. As I saw with awful clarity, that history continues to play out every day on chronic illness social media, in the endless stories of young, sick women who are fighting for both basic and comprehensive care. It can seem at times as though every other girl with a rare gastric issue is misdiagnosed for years with an eating disorder. I sometimes get the impression that the women with myalgic encephalomyelitis, a poorly understood condition with almost zero suggested therapies that can result in total debilitation, are supposed to stop bothering busy doctors with their suffering and quietly remove themselves from society instead. And now, more relevantly to many of us during this time of pandemic, there are chilling reports on the experience of “long-haulers,” a group reportedly comprised of tens of thousands of patients, seemingly made up mostly of women, whose viral symptoms continue long past the expected course of COVID-19. They describe, almost to a woman, being disbelieved and dismissed by doctors.
I should clarify that there are many doctors who do listen carefully to all of their female patients, who read the latest research and are good at referring patients to the correct specialists. There are scores of doctors who are curious and sympathetic instead of defensive when they don’t have an immediate answer. I’ve met them at some of the most important appointments of my life. And I have had many, many appointments. In fact, I saw 20 doctors before I learned what was actually wrong with me.
Yes, 20.
Each of those doctors performed their own tests and exams, some very invasive, some very involved, a few very painful, many familiar and simple. The answers that finally emerged had nothing to do with Lyme disease.
I learned that I have adenomyosis (a uterine disease that will most likely require that I have a hysterectomy) and inflammation in my small intestine (often the result of other chronic illness); the gastroenterologist put me on a restrictive diet that I have stayed on to this day. But most important, an MRI of my lower spine revealed slight bone erosion, which suggested that I’d had a past inflammatory episode there. A different test showed that I am HLA-B27 positive, a genetic mutation closely linked to, among a handful of other disorders, ankylosing spondylitis (AS), an autoimmune disease that primarily attacks the spine and joints.
Just like I will always remember that phone call with my primary doctor about the Lyme test results, I will never forget my first appointment with the rheumatologist who diagnosed me. I had already been to two other rheumatologists, but she was famous and had been recommended by another doctor I trusted. I had waited four months for this appointment and I knew I was supposed to feel lucky to have gotten it.
But I couldn’t feel lucky. I was so ill by then I could barely get myself onto the exam table. I wore the same sweatpants and sweatshirt every day, and I no longer bothered to try to look any better for new doctors. I was so weak and my heart was beating so quickly that the nurse held on to me, worried I might faint.
The rheumatologist, a small woman with curly hair, listened to me, looking into my face instead of at my chart. And then, immediately, she said, “I know what’s wrong with you.” She said it with such confidence that I wanted with my whole being to believe her, even though I was no longer very much of a believer. She left the room to get a shot of the immunosuppressant she had instantly prescribed; she wanted to start my treatment right then, that day, that minute.
“Right now?” I said. “But…are you sure?”
She said, “Let’s get you better.”
And guess what?
She did.
I inject myself once a week with Humira, a biologic that helps to calm inflammation. Almost exactly three months after starting treatment, I felt okay for a full day for the first time since getting sick. Instead of being excited, I was terrified. Normalcy was so incredible that I thought regressing again might break me.
I continued to slowly improve. I did especially well after my rheumatologist added hydroxychloroquine, the now infamous antimalarial drug that can be helpful for lupus and other autoimmune patients, to my treatment. I felt happy again for the first time in over a year. It is extremely difficult to feel joy while feeling feverish and physically debilitated, or at least, it was for me. Over time, many of my mysterious symptoms—the swelling in my face and urethra, the way I would black out when I stood up, the traveling pain, my total loss of appetite—cleared up. I began to have longer and longer stretches of fragile functionality, punctuated by weeklong flares of viral symptoms. My average daily health seemed comparable to how I imagined it might feel to be a relatively healthy elderly person. In other words, I was doing amazingly well. I began to feel my life opening in front of me, brimming with sudden, enormous possibility and open-endedness. I have come to think of that sense of potential as the hallmark of health.
I am 34 now. After losing a year of my life, a year in my little daughters’ lives, after having to leave the city that was my home for a decade when my husband could no longer shoulder the full responsibility of our family and we needed support from my parents, after my marriage had been severely fractured, after I’d lost touch with a strong circle of friends who I simply didn’t have the strength to keep up with, after the enormous fear that came with a loss of the health insurance that had allowed me access to so many specialists to begin with and the resulting (ongoing) struggle to find new care, after all that (and just in time for a global pandemic), I have reemerged into the world of the healthy. A few weeks ago I hiked a steep trail in the Catskill Mountains, all the way to the top, where I stood, victorious, looking out over the sprawl of the wintry world. There’s no way around it: You need to be able to climb to get to a view like that, and my gratitude for each step I’d taken felt as big as the mountains, as big as the sky. Some days I am bowled over by thankfulness. I feel the hum of the miraculous in my little, ordinary routines. I am, somehow, okay. I have lucked into this chance to feel well enough to live my life instead of just surviving it. I have days, sometimes whole weeks, each month when I feel magnificently normal.
But I will also never be the same again.
Not only will I always have this illness, even when it is in remission (there are no cures for autoimmune diseases), my perspective has forever shifted. Now, when I read or hear yet another story of a woman leaving a medical appointment in tears after being told, essentially, that she isn’t actually as sick as she thinks she is, if at all, I don’t see an unfortunate moment of miscommunication; I see systemic sexism. I see a lack of both empathy and curiosity from medical providers that is endemic in a hectic, overwhelmed health care system. I see a widespread, dangerous failure on the part of many doctors to pursue answers that lie beyond the range of the standard blood tests and diagnoses, particularly when patients are “too young” or “don’t look sick.”
When we, as a culture, poke fun at silly hippie women who are attempting to heal themselves with their overpriced Reiki treatments, it strikes me as an example of complicit participation in a shameful lineage of dismissing women’s lived experience. It felt like a gut punch when I learned about a popular chronic illness YouTuber who died after surgical complications: Trolls insisted she deserved to die because she’d been faking her illness the whole time. I wasn’t surprised when I read in the New Yorker that beloved British author Susanna Clarke, housebound with a mysterious illness that had been diagnosed as both Lyme disease and chronic fatigue syndrome, had turned to alternative treatments out of desperation.
After being dismissed by so many people, including the ones who are supposed to help during a time of great need, is it really so surprising that a frustrated, sick woman might end up sitting across from a caring naturopath or Lyme-literate doctor who validates the fact that the illness she is experiencing is, in fact, real?
Not to me.
To me, the women who pursue a chronic Lyme diagnosis are not stupid or crazy or gullible. They are working with the information they have. They are looking for answers. They just want to feel better. And if they do not in fact have Lyme disease but instead have one of the many other rare or poorly understood diseases that share symptoms with Lyme, they are not failing by falling into the “chronic Lyme” category—they are being failed by mainstream medicine. And they deserve better. They deserve real answers at the very least, and preferably, they deserve useful treatment.
Now, when I read about yet another woman with severe “chronic Lyme” who has light sensitivity, joint dislocations, and gastric problems, I can’t help but wonder whether she actually has some version of Ehlers-Danlos, a series of rare and complicated connective tissue disorders that can cause a huge range of symptoms. I have followed many young women online whose posts about Lyme eventually give way to posts about EDS. Other rare diseases are slowly unveiled. Certain symptoms that were attributed to Lyme become more pronounced until they reveal a link to some other condition. Once, I watched a woman who believed herself to have Lyme learn that in fact she had a rare form of cancer. And of course, when a woman describes her constant flu symptoms, I think of autoimmune disease. When she thinks her partial positive on the Lyme test proves Lyme, I think it may prove autoimmune.
And then, some days, my old fever reasserts itself, a strange pain blooms behind my eye, and I find myself googling my own diagnosis, a bitter fear rising in my throat. My most debilitating symptoms have never fit perfectly into it. What if I relapse suddenly, with no explanation? What if my lifesaving medication can no longer help me and my children have to watch their mother retreat to the bedroom, her life shrinking before their eyes until it is so small it is barely visible? On those days, it seems completely possible that the complicated processes of illness set in motion in my body are not totally understandable by current medicine. Maybe, I think, there isn’t a single title I can give the erosion of my health. Hell, maybe two summers ago, when my immune system became confused and compromised by the first attack of my disease, while I was still able to go outside and walk in the grass (and I remember a particular, lovely stroll through a field with my husband, before our lives fell apart), I also managed to get bitten by a tiny, Lyme-infected tick.
Related:
- I’m Furious That It Took Almost a Decade to Diagnose My Chronic Pain
- Why the Hydroxychloroquine Myth Persists
- What We Know About COVID-19 Long-Haulers Who Have Symptoms for Months