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Diary of a Diagnosis #3 – Checkpoints on the Road to Nowhere

“What did the tests show?”

“Nothing. Everything was normal.”

“Thank God. That’s good news.”

I look out the window, or at the floor, or trace the lines of my palms, maybe concentrate on my nails or cuticles.

“Um, it is good news, isn’t it?” I imagine them wondering silently: She’s okay, but is she, you know, okay?

“Yeah.” Of course it’s good news and brings some measure of relief, but it’s not all-inclusive, and therefore offers only a brief respite. There’s a downside attached. For the patient whose doctor wants to be certain that the heartburn is just that and not indicative of heart disease, a negative result equals winning deliverance. The one who’s been accumulating symptoms but has yet to find a diagnosis, that same result rules out another disorder, allowing her to proceed on her scavenger hunt – a mere consolation prize.

More than three years have passed since I first spoke with an ENT about a hearing problem, namely that in my right ear I hear what must be blood pumping through my veins, given that sound is always in perfect time with my heartbeat. Pulsatile tinnitus, he tells me. It is unnerving, but nothing to worry about, he said, and no way to treat it, so I try to ignore it. Later that year I returned because of a scratchy throat and raspy voice. These were the first in a series of symptoms, many of which began roughly around the same time, the rest joining in succession, each symptom with me still.

Some doctors I’ve seen: a hematologist, an endocrinologist, an otolaryngologist, a physiatrist, a few physical therapists, a gynecologist,  a neurologist, a gastroenterologist, a dentist, and I’ve yet to schedule the optometrist. (He’s next.) The usual checkpoints: labs, heart, lungs, more labs, allergies, more labs, MRIs, X-rays, CT scans, and now regular phlebotomies.

With each new symptom, every different specialist, each new round of tests, I’ve thought This is it. Now we’ll know what’s causing all this and how to treat it. There have been negative results. Positive results. Another referral. Another pile of new patient paperwork. Another round of tests. And another diagnosis – or lack thereof. Each one is another clue, another step behind me in this endless scavenger hunt. I imagine renting commercial space somewhere central to all my doctors where just after they assemble, Dr. House raises his voice strolling up to the whiteboard – “Differential diagnosis, people!” – and they begin to brainstorm.

A couple close friends have asked if I’m worried about what the results might show. But what it could be hasn’t been the issue (well, there have been fleeting moments…). What plagues me is the idea of the search going on endlessly while disorders are ruled out one after another but the symptoms remain, maybe new ones appear, while time, and life, pass by. The realization that there may be no end to this relentless fatigue, the feeling that someone is standing on my chest, the sense of fullness and heaviness descending from my right ear, down the neck, extending into the collarbone, and now down the arm, or any of my other symptoms. (My right side just feels so wrong.) My health, my body has assumed the role of dominatrix. Throughout the day she tells me what I can and can’t do. If I am stubborn and fight she whips me into submission, and punishes me for disobeying.

You’ll do as I say!

You see how problematic this relationship is. I only submit to journals, websites, and the like.

My body, my boss. She knows my mind runs far ahead of me, passion racing alongside. I have projects, plans. Things I’m aching to accomplish – freelance work, my own writing projects, plans for fundraising and awareness campaigns, return to volunteer work. I’ve got shit to do – and she’s standing in my way. Insistent on dictating my agenda. Refusing to relinquish control. I start something, she throws some stabbing pain my way. Plans to go out? She weighs me down with fatigue. Writing? A little dose of nausea, just enough to force me to lie down. She controls everything. Plans. Finances. Relationships. Illness takes control away from you, and unless you can name it (read: know how to treat it), you have no idea when you’ll get control back.

Some people think it’s crazy that I’d rather get bad news than to leave with no more answers than I came with. But if we don’t know what’s causing the problem we can’t stop it. I want to understand so I can do something. Take action. Take back some control. I just. Need. To know. Sure, there are medications deemed “appropriate” for some of these manifestations, and maybe some will alleviate the pain, help clear the fibro fog, or make things easier to do. But some symptoms ignore every attempt to stifle them, others only scream louder. And I don’t want to just try one pill after another, always adding more to the daily regimen, never figuring out what brought this all on. Even if these issues can’t be resolved, just knowing what to blame would help.

For the patient the diagnostic quest is an indefinite sentence to Uncertainty. A negative result may mean you can rule out heart disease or lupus or pulmonary trouble off the list of worries, but that doesn’t mean the symptoms disappear. People who know the patient often hold the erroneous assumption that after getting the test results one either gets a definitive diagnosis or normal life resumes. I don’t understand what’s wrong. I mean, they said it’s not cancer, right? As though not being able to name it or see unquestionable evidence of suffering means it can’t be real. She looks okay. Must be okay.

In an interview on 60 Minutes Dr. William Gahl, of the Undiagnosed Diseases Program, explained that the patient without proof – visible signs or a definitive diagnosis is often viewed as a hypochondriac, obsessive, or simply a complainer turning something insignificant into a major issue.  (You can watch the 12-minute segment here.)

If my doctors discovered everything stemmed from some easily treatable problem, I’d burst with gratitude and do whatever they said. If they found some rare disease or tumor it would be scary, sure. I’d get a second opinion, weigh the options, then be able to make decisions. At least  I’d have some idea of what might happen and how to deal with it. I could fight. I could plan. Or I could adjust. I could regain some control.

So I wait. Research. Hope. And try to press onward while trying not to push too hard. But I feel worse, push harder, make it worse, feel more desperate, do more research. Get behind, feel worse, push harder… Anything to get out of this cycle. Any direction. Any diagnosis.

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