|Follow along on Instagram @thewildercoast|
This might seem odd, considering that the half dozen doctors I'd visited in the previous two months had insisted, in what felt like a single orchestrated act of dismissal, that I was, in fact, "a very healthy girl".
So I kept switching general practitioners, making the assistant fill out the paperwork she wasn't happy to be filling out, transferring my files to someone new, someone who might listen to me as I sat on the examination table, trying to steady my voice as I read through the growing list of symptoms that I keep recorded on my phone.
At these appointments, in an effort to appear like someone who should be paid attention to, I always dressed as if I might be attending a job interview afterwards. I learned to keep my words even, free of emotion, as if I were a lawyer presenting the case on behalf of myself. I would try to get through my list of symptoms as quickly as possible, but there was never enough time. I'd choose my top five, the ones I found most disturbing, the most difficult to ignore.
But it kept not working. One by one the doctors appeared in front of me, white coated and dully impressed with themselves. They'd glance at their clipboards and assure me there was nothing much to worry about. One of them handed me a thick white binder filled with the names of local therapists. Another fixed me with a sympathetic look and said, "I'm so sorry you're depressed."
I never said I was depressed.
On one particularly confusing afternoon, a younger MD I'd been seeing on and off since I moved to Asheville, seemed to be absorbing what I said. She listened, leaning forward with her hands clasped around her knee, nodding at the appropriate times. But the time I'd gotten through my allotted time, she smiled and sighed, with a dramatic shrug. Then she asked brightly, "So are you planning on having a baby any time soon?"
By the time thanksgiving came around, I was, if not depressed, then at least completely baffled by the fact that nobody would help me. It was the first thought to hit me every morning when I woke up and felt the symptoms descend. On some mornings, my mind would awaken up but I'd find myself unable to move or even open my eyes- a type of nocturnal seizure. I'd lie there for a minute or two, conscious but paralyzed, rolling the question around in my head.
Nobody will help me.
Why will nobody help me.
It was over thanksgiving that I dragged myself and my husband to a privately run urgent clinic, having been hit with an intense and mysterious symptom known as mal de dembarquement. If I was unable to catch the attention of any doctor, then maybe husband could.
We were spending the holiday in south central Vermont, where I spent over half my life. At the clinic, I asked for a blood draw to test for lyme. I figured I could take advantage of being in New England, where Lyme is endemic and the doctors, I believed at the time, were savvy ("lyme literate."). The two times I had requested a lyme test in Asheville, I was immediately shut down. ("We don't have lyme in North Carolina.") On both occasions I backed down, thrown off by the way the doctors' faces instantly stiffened with annoyance.
This time, I demanded the test. I refused to leave until they agreed, until I watched somebody leave the room holding a vial of blood. And the doctor fought me. At first, she gave me the familiar chorus: "Look at you, you're healthy."
"I'm not healthy. I can barely walk right now."
"You say you can barely walk. Come back to me when you can't walk. Then we'll discuss what could be wrong." (This is not an exaggeration, although it's such outrageously bad medicine that if my husband had not been there to witness it, I probably would not believe my own memory.)
"I'm covered in this rash. It feels like I've been burned. I never get a rash."
She waved her hand- "That'll go away. You need to see a therapist."
"I already see a therapist."
"Listen, I could give you a lyme test, but the tests are largely inaccurate. They give false negatives the majority of the time."
"Maybe mine will be positive."
"It won't be positive. But what if it is? What if you discovered you had Lyme disease, why would you even want to know? Listen to me. You live in the South. Nobody down there will help you."
This is when David spoke up from his chair in the corner, completely even-keeled. "If she has lyme, she wants to know because it's her right to know."
The doctor turned to face him, incredulous. "And you approve of this?"
We both just stared at her, barely comprehending the audacity of a doctor to ask approval from a patient's husband like this. She threw her hands up. She was over us. "Fine." The door clicked shut behind her.
She was correct about the lyme test: they are complicated, and notoriously inaccurate. Many people who suffer terribly from lyme disease are presented with false negatives. (The CDC criteria misses between 1/3 and 2/3 of all true positives, especially in later stages.) In many cases, lyme is so covertly hidden within the body that the blood shows up as clear, the blood lies, although mine didn't.