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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About lauracgardner

Laura lives in an undisclosed location with her adopted dog.

Posted on June 9, 2012, in Diary of a Diagnosis, Healthcare and tagged , , , , , , , , . Bookmark the permalink. 1 Comment.

  1. Linda G. White

    A lot of food for thought (excuse the cliche’) here – and a lot people in pain, and those who love them, should open up about and discuss. Honestly.

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