What It's Like When No One Believes You're Sick

Getting my diagnosis for chronic Lyme disease was incredibly difficult. And now I have to learn how to cope.

There’s no way to explain illness to someone who hasn’t been ill. Like, seriously ill. It’s like saying “Enjoy your youth” to a teenager. And you can only say “I feel like I’m dying” so many times before it falls on deaf ears — and even doctors have deaf ears.

By the time I was diagnosed with Lyme disease in August 2014, I had been sick for two and a half years and seen 13 doctors. I was 33 years old.

It took that long, and that many doctors, for me to stop trusting the medical establishment and start trusting what my body was telling me: I am really sick. I turned to what is known by chronic Lyme sufferers as a “Lyme-literate doctor.” This is a doctor who sees my illness as a tricky, chronic infection that needs more than the recommended two weeks to one month of antibiotics. I’ve been on antibiotics nearly a year, and I may need years more. But I am finally getting better. And it is only because I stopped listening to the medical and scientific powers-that-be who told me this was all in my head.

This is my story.

Right before I got sick, I had never felt better. I had finally gotten over a bad heartbreak, after living in Europe for six months, and I returned to New York bursting with energy and goodwill. Spring hit early, and I was pathologically happy. I remember thinking, Please, please don’t let this feeling ever end.

My first coherent memory of my body’s revolt happened while I was at my new internship at a nonprofit. As I smiled at the cute intern sitting across from me, I realized that the right side of my face was numb. The next day, I went to the ER, where I waited six hours. When the doctor finally came around, I was crying because I was alone and hospitals feel like prisons. She asked me to smile, which I could. She told me it was probably just a vitamin deficiency, wrote down the name of a chocolate calcium supplement on her pad, and handed me my candy prescription.

Within a month of that first ER visit, I was so tired that no amount of sleep or caffeine could snap me out of it. The Fatigue was an entirely different animal from even being totally exhausted. And I had these horrible body aches that were deep and rolling and buzzing. Paired with the Fatigue, they pushed me deeper into an alternate reality as illness took hold.

I felt like I was dying.

I went from one useless doctor to the next. When I asked useless doctor No. 3 to test me for Lyme disease, which a psychiatrist family friend had suggested, he refused. He said that psychiatrists aren’t doctors and that there are too many false positives for Lyme. And my aches were muscular, not joint aches, which mainstream medicine considers one of the few objective signs of Lyme. That and a bull’s-eye rash from a tick bite. And I had no memory of ever being bitten by a tick.

My doctor prescribed an antidepressant, even though I swore I wasn’t depressed. To prove it, I exercised more, meditated every day, kept up social appearances. I discovered that I could force my body to do almost anything, even though all that felt physically possible was to stay in bed and watch Netflix, like, forever. I forced it to go out with friends. I forced it to wash my hair. I forced it to eat, but I lost weight anyway. To the outside world, I looked great. Apparently, you can’t be seriously ill if you look great. Sometimes I wonder: If I had stayed in bed until a concerned friend or family member dragged me out to the doctor and said, Something is really wrong with this girl, would things have turned out differently? Instead, I thought that looking presentable, having clean hair, and never letting myself cry until after I left the doctor’s office would get me better treatment. So I continued to smile through my numb face.

Lyme disease first appeared in the 1970s in Old Lyme, Connecticut, where a cluster of children mysteriously came down with juvenile rheumatoid arthritis. It wasn’t until 1981 that researcher Willy Burgdorfer identified that an organism carried by deer ticks was the culprit for these arthritic symptoms. This bacterium, named Borrelia burgdorferi after Willy, is shaped like a spiral and called a spirochete. The spirochete can drill into any part of the body and affect every organ system, from the joints to the brain, and like syphilis (also caused by a spirochete) is a “great imitator” of a myriad of other diseases: rheumatoid arthritis, MS, fibromyalgia, chronic fatigue…and mental illness.

Most Lyme cases are caused by infected nymph ticks, infant ticks that are poppy-seed-sized. Their bites are often painless and go unnoticed by their human hosts. They transmit the Lyme bacteria — and a host of other co-infections that can make you just as sick — through their bite within 36 hours of attaching themselves to your body. One of the telltale signs of Lyme can occur within the first few weeks of being bitten: a circular rash with a red outer border (hence the “bull’s-eye”), along with joint aches and flu-like symptoms.

According to the International Lyme and Associated Diseases Society (ILADS), fewer than 50% of patients with Lyme disease recall a rash and fewer than 50% of patients recall getting bitten by a tick.

I still don't know how I got Lyme disease. But after I had been to several doctors, I remembered that I had been in the Hamptons six months before I got sick, walking barefoot in the grass. There are a lot of deer in the Hamptons. Deer carry ticks. Your body can harbor the Lyme bacteria and when triggered present a slew of confusing symptoms.

So many of us don’t have the rash. So many of us pass off any flu-like symptoms as, well, the flu. To complicate matters, there is no effective blood test for Lyme disease. The ELISA test, which most doctors following CDC protocol will give you, only has 65% sensitivity. You have to “pass” the ELISA test to move on to a more sensitive Western blot test. And the longer you have been sick without treatment, the more likely you will have a false negative on this two-tier testing approach, which misses up to 50% of cases.

The only thing I knew about Lyme disease before I got sick was from a friend in grad school. We became friends on the first day of our MFA program and often rode the subway together to and from school. She told me she had Lyme disease, didn’t know how she got it, and was on antibiotics that made her really tan that summer when I visited her and her boyfriend in the Hamptons. She looked fine to me, and she never complained, so I didn’t ask much about it, if at all.

It was only until I got sick myself that I learned that Lyme disease, unbelievably, is a political disease. There are some seriously warring sides. The Infectious Disease Society of America (IDSA) dictates the diagnostic and treatment guidelines that doctors and insurance follow. In cahoots with the CDC, it recommends only a few weeks of antibiotic treatment. If you’re still sick after that, you have “post-treatment Lyme disease syndrome,” for which it offers no medical treatment except to suggest counseling. As exposed in the documentary Under Our Skin, health insurance companies use the IDSA guidelines to restrict diagnosis and deny treatment — and save costs.

In the opposite camp, there are doctors who are losing their medical licenses for treating Lyme disease aggressively with long-term antibiotics. They see the disease as complex and persistent, one that can evade the immune system and antibiotics and faulty testing. The IDSA dismisses the existence of chronic Lyme disease and the doctors who continue to treat your ongoing infection as “quacks.” And yet there are countless testimonies from patients that these quacks gave them their lives back.

Recently, I came across a picture in my iPhoto library of me dressed as Aphrodite on Halloween. It was taken while I was living in Barcelona, five months before I got sick. In the photo, my new, dashing foreign friends surround me and I am having the exciting experiences that a young woman goes to Europe for. When I look at the picture now, I think, She has no idea what’s coming. I also look at her fondly, like a sister, but someone who is not me. I know other people look back and mourn that person they were before. I don’t. Sure, there is enviable health and innocence in that young woman masquerading as the goddess of love. But I see her as someone who was often trapped in the headspace of her own sadness and heartbreak. I see someone who was really hard on herself — and now my life is all about making everything easier for myself. In a way, I am much more carefree today than I was then. I just have to seize those moments.

Make no mistake, I never think of this disease as a blessing in disguise or as a teaching or as something that happened for a reason. My body is a prison and, at times, a hell. But it has really tested my convictions: to write, to help others, to find love. How badly do I really want these things? Badly, it turns out.

To prove to useless doctor No. 3 that I was a good patient, I went to a therapist. The hourlong subway ride to her office felt like climbing Mount Everest. And not just because I had zero energy. My body had become an exposed network of nerves, and the subway was a hell of sensory overload. Basically, riding the subway — something I had never thought twice about before — was one long anxiety attack. The therapist told me that the Fatigue was definitely a symptom of PTSD from a sexual trauma that happened when I was 15. She promised that if I came twice a week she could get me through my “somatization.” Desperate, I signed on. As the therapist scrutinized my face for revealing micro-movements, I struggled to find words for what my numb face was trying to “tell me” about once getting punched in the face.

I went to my brother’s wedding, even though I felt like I was dying that day. My family was too distracted by the wedding to pay attention to my "psychosomatic" illness. Anyway, the therapist had counseled me to “fake it until I make it.”

Four months and $7,000 later, the therapist dumped me. I didn’t even know shrinks could do that. She said something about her hands being tied, which is what my doctor had said when I refused to take his antidepressants. Even though I strived to be otherwise, I was being told, again, that I was an uncooperative patient. I had felt like I was dying. Now I felt like killing myself.

Around this time, I started an eight-month yoga training run by my longtime yoga teacher. Committing to my spiritual practice was something I had planned on doing before I got sick. Plus, there was the promise that this intensive training would excavate and reclaim energy lost to an unhealthy ego. When I interviewed with one of the teachers in the training, I was up-front about my mystery fatigue. He suggested, in his thick Eastern European accent, “Maybe you’re so tired because you’re too busy thinking about yourself and not others.” I looked at him, and he just shrugged.

Sometimes my yoga teacher spoke about the Spirit of Gravity that tries to mess with you when you lean into your spiritual practice. I considered that an invisible, malevolent force was wreaking havoc in my body as a spiritual test. To me this wasn’t any crazier than another doctor telling me that happiness can be a source of stress.

Winter hit and I became too sick to work even my part-time, work-from-home job. Sickness had become my job. There were long commutes to doctors’ offices way uptown. There were hours on the phone arguing with insurance. Waiting rooms. Maybe I could have kept this up if I had a partner to help me. You know, for the in sickness part. Really, I just needed someone to tell me every day to keep going.

I flew home to California so that my parents could take care of me. Being 32 and single and staying with my parents for an indefinite period of time wasn't exactly what I had planned for my life.

It was spring again and I dragged myself back to New York to see an integrative MD on the internet-fueled theory that I had adrenal fatigue. Integrative meant that she combined Eastern and Western medicine — and didn’t take insurance. She looked at my tests from all my useless doctors and told me that I had Lyme disease.

She showed me a test that an esteemed rheumatologist had given me when I asked her to test me for Lyme. Right there — amid number ranges and other things I had no clue how to read — was the bold-faced word positive.

But the rheumatologist had told me that I didn’t have Lyme! Confused, I brought the test to a reputable infectious disease specialist to get a second opinion on what this integrative MD had said.

He was adamant that I didn’t have Lyme disease and that I shouldn’t let anyone convince me otherwise. When I asked him what was wrong with me then, he suggested chronic fatigue, or maybe fibromyalgia, while admitting they were “wastebasket” diagnoses — that is, arrived at through process of elimination. I literally looked at the wastebasket in his fancy office as he said this.

But I knew something was really wrong with me, and so I started taking the antibiotic doxycycline that the integrative doctor prescribed. My body became a killing field. When the Lyme bacteria die off, this thing called herxing can happen. Your immune system wigs out and aggravates your symptoms. For me this meant that my whole body would throb and pulsate with aches worse than I had ever felt. The only thing I could do was soak in really hot Epsom salt baths, almost passing out from the heat, until the throbbing subsided.

I scoured illness narratives, trying to glean from them how to cope, and yet in the background of every one of them there was a faithful boyfriend or doting husband. I didn’t have that. My family was 3,000 miles away. So I took myself to a support group in the same hospital where the rheumatologist told me I didn’t have Lyme disease. A man ranted about the lesions in his brain. A nice woman with her hair falling out showed me the PICC line implanted in her arm for IV antibiotics. Stories of going blind. Stories of not being able to walk, think, or read. Seizures. This was Lyme disease, and I cut out early and sobbed on the subway ride home.

After four months of taking antibiotics, I still didn’t feel better. The integrative doctor said maybe it wasn’t Lyme disease after all. She suggested that I see a cognitive therapist to work on my “fear-based thinking,” a therapist to whom she sent her more “difficult” patients.

A year passed.

This is the year that I lost friends. My iPhone Contacts favorites diminished to two friends and my mom.

What was wrong with me? It was all I could think about; it was all I could talk about. I gave up on doctors. Friends, even the ones who had really been there for me in the past, gave up on me. When I did go out, I was masquerading as a well person.

My best friend, who stuck by me, put me in touch with a girl my age who had fibromyalgia. At this point, I halfheartedly resigned myself to this incurable, lifelong condition. At least it was something I could tell my boss and keep my job working from home during the few hours a day I had energy. Really, I wanted to know from this girl: How do you live?

Turns out, she just told people she had fibromyalgia because most people didn’t understand that she could be sick for five years with Lyme disease. Over the phone, we compared our Western blot tests and we had identical positive antibody bands. I was so happy, and so angry.

Then she gave me the name of a Lyme-literate doctor who would not think this was in my head.

When I was 20 years old, a New York City cab driver read my palm. He said I would meet a wonderful man, when I was in my thirties, who would make all the heartbreak worth it. He looked at my lifeline. There is a broken spot, and then it continues. He told me I would get sick and then get better and live a long life.

When I’m alone in my apartment and herxing so badly that I’m curled up in a terrified animal state, I look at my palm and it soothes me.

I tell myself it’s OK to watch every romantic comedy on Netflix and not feel guilty. Guilty pleasures are part of coping, and coping is part of getting better.

I've given myself permission to say no to anything and everything that is not necessary to my survival. This is my body. My most important job now is to take care of it.

“Don’t let this disease control you.” I spoke on the phone with a woman who was treated for Lyme disease for 10 years, and is now totally fine. When I asked her how she got through it, she said she always knew that she was going to get better — and wasn’t going to give up her life.

I go on dates when I can. I learned to surf, and surf when I can. And I rest most of the time.

This isn’t forever, even though it feels like forever. This is just a fissure in my lifeline.

I keep going.

Skip to footer