For those with “invisible” illness, it’s difficult to find someone who believes you’re sick – not just depressed, anxious, or tired – but sick.
These nonbelievers can be family, friends, or acquaintances, but the ones who leave us most helpless are the doctors. Physicians who dismiss our illnesses make us vulnerable to exacerbation of symptoms and, sometimes, cause irreparable harm.
Maybe you know what I mean.
You were never sick; always strong and productive. Now, here you sit in one more exam room. How many has it been? How many white-coats have pressed a stethoscope to your chest, shone a light into your ears, nodded and wrinkled a brow in response to your long list of complaints? How many times have you sensed an internal eye roll? How many times have you witnessed one?
But then it happens. You find the doctor who really looks at you. Who nods, not merely to seem attentive, but to acknowledge that he or she gets it.
That happened for me nearly five years ago.
Lyme disease can take its time before finally making a stand. Mine was like that. Symptoms came and went for years. I didn’t have the experience of seeing a long line of physicians, but I should have. I was just too hard-headed to go. As a nurse, I worked with doctors and didn’t wish to be at their mercy any more than I already was. So, I dealt with it.
Okay, I ignored it. I did my level best, anyway. I ignored the joint pain, panic attacks, sleeplessness, the flu-like feeling. The soles of my feet were like raw meat, so I bought shoes with more cushion and sat more often. My brain, eyes, and ears didn’t tolerate light or noise, so I wore earplugs and stopped going to movies and malls. I ignored it all, until I couldn’t. In my defense, it’s tough to ignore two weeks of vomiting, chills, fever, and diarrhea.
At the time, an intestinal parasite hiding in bagged lettuce was in the news. I told my doctor that was likely my problem. Accepting my diagnosis, he prescribed the antibiotic I requested and seemed happy to spend no more than five minutes with me, order a single lab test, assure me he was impressed I’d managed to stay slim, and remind me to get up-to-date on all my “woman stuff.” Which I did.
Following that intestinal inconvenience, I began to decline until pretending became too much. My mind was going. I couldn’t remember the way home from work, how to get there, or why I was even in my car. I started trying to open doors with my cell phone, turn my dryer on with the light switch. My ears were ringing, my head hurt, the right side of my face was sliding downward. My rib cage burned; my muscles twitched, ached, and jerked. I could barely walk. Everything either hurt, malfunctioned, or both.
But it may have been the fatigue that finally pushed me over the edge. Maybe it was the day I fell asleep in a patient’s home while interviewing her. Or, maybe it was the second time that happened. I’m stubborn and that’s not a symptom of my disease.
Luckily for me, the iron pill prescribed for my nine-point-something hemoglobin made me sick. That tiny, forest-green tablet bullied me into action and through the right door.
My new doctor’s practice had a name – not just doctor so-and-so. I won’t give the name here. I’ll just call it True Health. It was in an old brick building, in a tiny town I’d been to, maybe once in my life, but I had a patient visit there, and afterward saw the sign. I thought it was a health food store and decided to look them up, hoping they’d have an iron supplement I could endure. Turns out they did – and a whole lot more.
I’d never heard of functional medicine. I was entrenched in the industry we misguidedly call “healthcare.” Reality is, “ill-care” was what I did for a living – managed peoples’ illnesses with pills and more pills to keep symptoms at bay. It’s all I knew. But since functioning had become a problem, I thought I’d give this new approach a try.
Seeing a functional medicine practitioner is something else. Before my first visit, I had to complete a twenty-three page questionnaire – much of it consisting of inquiries into my bowel habits. The idea that my first visit was to last an hour and a half was jaw-dropping, but it was the first fifteen minutes that left me stunned. Turned out, he was an expert in the disease I didn’t know I had. When he said, “I think you have Lyme disease.” All I could do was repeat, “Lyme disease?”
I recall bits and pieces of that day, but his words, as he left the examination room, imprinted on my mind. I’ve held on to them for all these years, through unspeakably difficult days. His hand on the doorknob, he turned back and said, “A lot of people will try and make you feel crazy for what you’re going through, but we don’t want that for you. We just want you to get better.”
There were many reasons I kept it to myself, but when he said that, I felt something break open; sorrow and relief rushed in together. I found confusion and clarity, peace and uncertainty. I was a jumble of emotions, but it was the comfort, compassion, understanding, and assurance – all the things a sick person needs, things I hadn’t yet admitted to needing – I found those in abundance at that place, enough to deal with what lay ahead.
That place is gone. My doctor’s practice closed.
The word I’ve heard most from his other patients has been “devastating.” I concur. It was a blow, a punch in the gut. The day I found out, I sensed a snap. The cord from life raft to ship had been cut. Adrift, unsure, alone, I panicked; found myself floating in a fog with multiple, but untested, paths on all sides.
My doctor was a safety net. I had settled in and expected to stay until I was well. When his doors closed, I had to start over. He wasn’t the only one out of practice. It had been a long time since I’d had to tell this tale from the beginning; had to complete a new patient form or use my GPS to find my healthcare provider.
More than a year has passed, and I’m still searching for a new doctor.
It’s been years since I’ve had to feel nervous; uncertain about whether the person sitting across from me has my best in mind. I don’t want to wring my hands and avoid eye contact while I call out my myriad of physical and neurological disturbances. I dread sitting alone in a foreign, sterile room, unable to concentrate on the book in my lap, instead staring at soap dispensers, tissue boxes, sinks, and paper-covered exam tables -- anything to not be caught wide-eyeing the door when my new doctor walks in. Like a weathered sea captain taking sailing lessons or Jack Niklaus signing up for golf camp at the local YMCA, I don’t want to be a new patient because I am an old, experienced one.
Being sick has worn away some of my stubbornness. I know I was spoiled, on my second attempt, to find the help and wisdom I needed to get better. I know what’s ahead for me is what many with my condition, and other poorly understood illnesses, have tolerated their whole lives, and so, I find myself again, breaking open on the inside; once more a jumble of feelings. Hope will show up, but right now grief wins the day. I am succumbing to a path I did not and would not have chosen.
We all know the comfort of familiarity, of coming home after a hard day’s work, a funeral, or a long trip. We see our favorite chair, our pillow; tune in to the sounds – the ones we don’t always notice because they’re always there, a refrigerator’s hum, a clock’s tick, a dog’s soft snores. A doctor’s office can be a place like that when you’re sick for a long time. After a hard month, a familiar caregiver can be a welcome sight, can trigger a contented sigh borne of trust. It can be a place where you anticipate, with relief, the opening of an exam room door; where you know you’ll leave encouraged.
Once you know a doctor is listening; that he hears and cares, you let yourself believe he wants what you want, to see you well and whole. And so, you tell him your story. You start at the beginning and each visit you speak to him the middle. You’ve no doubt he’ll be with you at the end, bringing this affliction to a healthy conclusion.
But sometimes, his role finishes before you’re ready. He steps out of your story, and you’ve no choice but to start over.
We’ve all heard people say it, that they put their lives in the hands of a doctor. I did. Not consciously, but in that room for the first time, I lay down the weight of all I used to be and now was not; all I wished to be and do again. He had willingly picked it up; lifted my burden. In that place, I had a safe room where someone wanted me to tell what hurt, where I would be validated and find healing, a place I could express my fear that I would forever be unable.
As his practice ended, mine began again. I’m not sure if this will be the commencement of a whole new marathon, or just a long, steep incline in the middle of the same endless route. But I’m breaking out my equipment -- my long list of medications and symptoms, treatments that worked and ones that failed. I don’t feel ready, but I’ll narrate, once more, the longest story of my life and hope my new doctor will really, truly just want me to get better.