What (Not) to Say to People with Chronic Conditions

Forest Near the Dosewallips River Last Week
Forest Near the Dosewallips River Last Week

“But isn’t there something you can take?”

If you have a chronic condition like me, this question camps out on your front porch like a creeper and waits to hop into every visitor’s mouth.

“But isn’t there something you can take?”

It comes from the best of places, I promise. The people around you just don’t want to see you suffer. But it also originates in cultural misconceptions about illness and disability as problems that are exclusively medical and entirely solvable.

I have both traditional migraines with aura and migraines that manifest as vertigo. To that last one, people react as if I am probably lying to them. Which also annoys me. But yes, my vertigo has nothing really to do with my inner ear. It’s a problem with brain processing. Mind-blowing, I know. Literally. But this is far more common than most people seem to realize—even physicians who have initially misdiagnosed my vertigo (for the skeptics, here’s just one type of migraine that involves vertigo). When I finally saw a balance specialist, Chris Morrow at the Pacific Balance and Rehabilitation Clinic, he recognized that my vertigo was really migraine within minutes of interacting with me.

The problem is, a lot of drugs simply don’t work for migraines. Migraines are poorly understood, and little research money is invested in improving that understanding. If you don’t believe me, even the non-profit American Migraine Foundation says so.

I have taken ibuprofen, Tylenol, Excedrin, and two prescription triptans. The first three had no effect. The last two decreased the intensity of my symptoms but prolonged them. I don’t know about you, but I wanted my regular migraine back—which would slam me against a wall, let me sleep it off, and recede six to twelve hours later. Rather than days later.

This isn’t all that surprising, as—again—our researchers and physicians simply don’t understand how migraines work. So what, exactly, are their drugs targeting? Usually, they shoot for short-term relief, but this often costs patients long-term well-being. David Buchholz, in his book Heal Your Headache, does a great job explaining why for anyone who’s curious. But the fact is that you can’t medicate something you don’t understand. Duh.

So even though I know that people who plead with me to take drugs are speaking out of genuine concern, they’re also asking from a place of ignorance about my condition.

And they’re also asking from our culture’s predominant assumption that people whose bodies and brains function differently need to be “fixed.” They want proof that something is really wrong with me. And powerful prescription drugs that “fix” me legitimize my differentness—because they make it go away, and then everyone can be comfortable again. Which is really what the medical model is about. Regulating all bodies so that all bodies are the same.

As Sheryl Burgstahler and Rebecca Cory (2008) point out in their astute essay, “Moving in from the Margins: From Accommodation to Universal Design,” the desire for proof of disability and a tidy list of ways to accommodate or treat it “promotes the medical model of disability, where disability resides within the person. This approach blames the individual for the inaccessibility of” services and treatments, rather than acknowledge the limitations of these (p. 565). This way of thinking about physical illness and disability “creates an environment of mistrust” (Burgstahler & Cory, 2008, p. 567). Which is absolutely no help to anybody.

Because I know more about my body than you do. And you know more about yours than I do. We’re different. Count on it. For me, the best way to manage my vertigo—which is really a migraine—is to stick to a regular bedtime, eat lots of fruits and vegetables, get in cardio exercise five times a week, avoid caffeinated beverages, stop indulging in the once-a-year cigar, and never drink red wine, champagne, or colored liquors. Yeah. I’m basically Mormon again. It pisses me off, but it works. I learned this from Dr. Morrow eight months ago, and it has changed my life. However, hormonal shifts, time changes, weather changes, and stress can all bring me to my migraine threshold. I do my best, but sometimes I’ve been too sick to exercise, and then the weather changes, and I get my period. Bam! The room spins, and I can’t stand up. I’m not even kidding.

And then friends come around and ask, “Isn’t there something you can take?”

Here’s what I’d rather you say to your loved ones who are doing their utmost to manage their conditions but still have to deal with the fallout sometimes. It’s simple:

“Is there anything I can do?”

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5 thoughts on “What (Not) to Say to People with Chronic Conditions

  1. Our culture definitely has a weird way of looking at disabilities.. Those that aren’t “visible” seem to be the most misunderstood and stigmatized. I remember at the tail end of my high school career, I had a few friends that were (and still are) struggling with depression.. I told one friend that he should start doing something that energized him (or something) and he’d feel better if he, basically, just tried to feel better. I cringe thinking back to it – I just had no understanding of depression whatsoever, and what an awful way of approaching how my friend was feeling. We need a radical change to how these topics are taught in our society.

    1. I completely agree with you, Kenealster. And I had reactions similar to yours when I was in school, too. Developing our awareness is definitely a lifelong process. For myself, I’ve found one of the most useful approaches is to acknowledge that none of us can fully know what it’s like to be someone else. But trying to understand someone else’s experience is always a worthy endeavor.

  2. I’m with you. I’ve been suffering from post concussion syndrome and whiplash that has my brain feeling ‘jiggly’. My head is so sensitive that touching my hair makes my brain ‘sparkle’. It’s been hell figuring out how to deal with it and get treatment. Doctors, including a neurologist, labelled it migraine vestibulopathy (?) and gave me amytriptaline.

    I finally got a diagnosis of ‘screwed up neck’ and misaligned axis vertebra by a chiropractor who actually wanted to understand. He’s treating me with nucca technique and I swear by it.

    I wish you all the best. You know your body better than anyone.

    1. That sounds incredibly difficult, Joanne. I’m so glad you’re exploring a treatment that’s working. And I hear you–those health care practitioners who are open to listening and exploring options can change our lives. Thanks for your kind wishes, and same to you on your continuing journey towards no more sparkly brain!

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