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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.

Diary of a Diagnosis: The Power of Perception

In my last post I ‘fessed up about not telling my doctor information that I (in my professional medical opinion) didn’t think was significant and minimizing symptoms to my family and friends. Look, it’s not like I had a stroke a couple years ago and didn’t think my primary doc would care, or left out something that was a result of a horrendously embarrassing incident just so I could save further humiliation. You know what I’m talking about. It’s all the Stuff You Don’t Think Matters. Over the counter drugs or supplements. Herbal remedies that you don’t think he’ll agree with. Those cigarettes she’ll just tell you to give up for the umpteenth time and you’re just tired of hearing about. Things that don’t even come to mind when you’re filling out the medical history and signing privacy forms and promises to pay. They ask for a list medications and supplements, and it’s easy to think that the allergy pills or extra ibuprofen doesn’t matter or that the ginseng or calcium don’t count because they are natural or just vitamins and give me a break – you’re supposed to take enough vitamin D – why would they care, right? Ah, but all those things do matter, friends and neighbors. You can indeed overdose on vitamin D, as our helpful friends at the Mayo Clinic explain here. And everything you take interacts with everything else you put in your body, drugs, herbs, and food included.

I can’t think of anything I haven’t told my doctors at this point. But hell, two years of trying to figure out what caused my body to start accumulating symptoms has been frustrating, at best, and it’s probably safe to assume that now I give them all more information than they could ever possibly want. (Sorry, but thanks for listening Doc!)

As for family and others, that isn’t the case. There could be a multitude of reasons for not telling your spouse about the chest pain or the blood or whatever is keeping you up at night, for not talking to your kids or your aged parents about the real reason you’re having that next MRI. Our reasons for sharing this info or not are as varied and complex and different from each others’ as are our situations. There is one reason though that I believe more of us have in common than not: our preconceived notions about how others will or won’t respond.

Recently the American Chronic Pain Association took surveys to explore the way people with fibromyalgia see themselves, versus the way the general public perceives them. The results of the surveys, titled “Two Takes on Fibro: Public Perceptions and Private Realities,” were telling.  Though almost the entire group of the general population surveyed had heard of fibromyalgia, most of them were not aware of how the condition affects daily life for those dealing with it. (See the Occupy Counter: the Place Setting Resistance from DOD #1 for an example). Still, forty-one percent of them felt that people with fibro are “courageous.” (Thanks, manJ) That topped the list of words they used to describe them. That was a far cry, however, from the word most fibro patients selected to describe how they believe society views them. Sixty-six percent of fibro patients surveyed believed “complainers” was the word society would use.  Even now, having read these results, I have to admit that I would have said the same.

“It is a capital mistake to theorize before one has data. Insensibly one begins to

twist facts to suit theories, instead of theories to suit facts.”

-Arthur Conan Doyle

If we’ve ever met, I’ve likely made assumptions about how you view me, even spent time imagining the judgments you might make. She’s lazy. She could do (insert random activity), if she wanted to. So what if she’s tired, everybody is. She never wants to do anything though. I don’t know why the hell Laura rarely calls anymore. She’s either forgotten me or doesn’t care anymore. She’s becoming anti-social. And this, of course, despite my best efforts to ignore that voice, affects how I interact with others – doctors, family, or acquaintances.

Why is this a problem? Because for one thing, as any shrink will tell you, suffering in silence, alone, is not healthy. Okay. We know this. But say you never mention the chest pain you’ve been having to anyone at all, for fear they’ll not take you seriously, then one day the pain is tremendous, bad enough that it scares you into mentioning it for the first time. And then your wife, husband, kid or neighbor gives you an all-too-common response: “It’s probably nothing. Most likely just stress.” And you croak. Maybe that sounds like a drastic example, but is it really? They give you that response because they don’t know that the pain has been consistently increasing for several months, and spreads down your left arm and does all the things they tell us it will do when a heart attack is on the way, so they assume it’s nothing to worry about, but if they knew what was really going on – even if they did think you were a complainer – they may realize the seriousness of it and call 911, saving your life.

In her outstanding essay titled “The Pain Scale,” Eula Biss writes that, when asked to rate pain on the infamous one-to-ten scale, the majority give it a five, unless they are really, probably above what they would consider a ten. Think of the implications here. How could I expect a doctor to provide the most appropriate treatment if I am minimizing my pain and she then believes, for example, the sciatic nerve isn’t yet a problem, otherwise I’d be in more pain? This as I sit there in agony, answering the rating question with an unsure “I don’t know, maybe a five, I guess.” How could I expect anyone to not wonder why the hell the dishes have piled up or a colony of dust bunnies has moved in where the vacuum used to run regularly, when I don’t tell them how much it absolutely kills my back to do these simple, everyday tasks?

But who the hell am I to talk? I am guilty on all counts. I never know how to rate my pain, for all the reasons above and more. What an eight is to me would, I imagine, only have been a five or six to my father, who we all knew was in real serious pain when he finally gave in and took the morphine. But I think of my friend’s daughter who, at all of eleven years old has been battling Ewing’s sarcoma for the past year and had numerous surgeries. “What’s your pain level today, Laura?” they ask. And I imagine that incredibly brave and very young girl and feel like an utter coward simply for admitting I’m in pain. Who the hell am I, where do I get off saying it’s a seven today when she is back in isolation and just had yet another operation?

There is no answer here. The logical Laura knows that just because other people suffer – just because I’ve seen my own father writhing in agony – doesn’t mean my pain is any less significant. She knows this because, well, people tell her and evoke the logical Laura. The louder voice almost always wins though. And I keep my mouth shut, not wanting to be wimpy, not wanting to be thought of as weak, a coward, or any of a number of other negative descriptions. But in the end not being forthright could cost, and it could cost dearly.

I thank the ACPA for conducting that survey and hope that the results are talked about over and over and the word is spread and people like me stop assuming others think the worst of us (even when we think it of ourselves), which only increases anxiety, which only negatively affects the physical pain, which only adds momentum to the whole pain-stress-depression-pain cycle. Discussing our perceptions, even when – and especially if – those perceptions are wrong, can only increase understanding. Which can help, all parties involved and in many ways.

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