Before I go, I have something to say

Invisible Illness

Some illnesses are dramatically visible, and they can embarrass us. “Don’t stare,” we’re taught. Others are less visible. There are good things about having an invisible illness. If you try really hard you can fake it, and other people may think you’re just fine. Take headaches (please). You can’t see them, the way you can a broken leg or raging case of shingles. It’s just pain, lodged behind your skull somewhere. No one can see what feels like a red slash across your forehead. They might notice your glowering frown, but then again, they might think you’re just concentrating hard on your job. If only.

Invisible illnesses run the gamut. From multiple sclerosis to chronic fatigue immune disorder, from diabetes to asthma, many serious diseases show themselves only when they flare up, at their worst stages. Still, they are there, working their destructive doom as their unfortunate carriers try to carry on despite the pain, numbness, or exhaustion.

I have a friend, let’s call her Nancy, with a non-fatal form of lupus. It’s robbed her of her sense of smell (and, consequently, her enjoyment of many foods), dried up her eyes, and left her excruciatingly sensitive to the sun. She’s the one wearing the long-sleeved shirt and the big floppy hat in the unbearably hot summers where she lives, down South.

I have another friend, let’s call her Beth, with fibromyalgia. She was also allergic to everything in her New Jersey home, so she moved to New Mexico, where it took her only ten years to become equally allergic to the plant life, the sandy winds, and the hot sun of that Southwest geography. When she’s feeling bad, she hides in bed, but the pain tracks her down.

I even have a friend, let’s call her Jayne because that’s her real name and she’s always been open about her illness, who has cancer, a fancy kind called leiomyosarcoma, which is incurable but sometimes treatable for a surprising number of years. You wouldn’t know she was sick, either, except she had to start using oxygen when the cancer spread to her lungs. Aside from that, with her great smile and warm sense of humor, her awful illness is invisible, except that she tires easily.

Not all illnesses brand you, with the cherry-red wheelchair for paralysis or the unstoppable tremor of Parkinson’s. As long as you’re able to paste a smile on your face and save what energy you have for your public, you’d be amazed how long good health can be feigned.

My nearly four-year experience with migraines is no secret. (Note: As much as I tip my hat to anyone whose obituary states they “battled” cancer or whatever demon took them, I refuse to use that verb myself because frankly, I often gave in and took long naps, sitting out many battles in abject despair. Call me a coward; call me a realist. I couldn’t fight all the time.)

But that’s not what I want to talk about today. I’ve been to the clinic in Michigan, I’ve spent 18 days in the hospital, and my headaches are, if not completely eradicated, at least something I’ve got serious control over now.

It’s this other condition I wanted to mention. Called by various names, from neutrally mediated hypotension to neurocardiogenic syncope, it’s really pretty simple: I faint easily. Not at the sight of blood; I’m fine with that. But leave me standing for more than a minute or two, and down I go. Or down I wish I could go. If you see me shifting from side to side, leaning against the wall, perching inelegantly on the back of a chair, squatting down in a store as if I really needed to look at the magazines on the bottom row of the rack, chances are I’m doing that to keep from toppling over.

When normal people (you, I hope) stand and chat in the hallway, their bodies compensate. Their hearts beat faster, their blood pressure rises, and their blood vessels constrict – all to keep the blood around the brain and other vital organs. When abnormal people like me (and others in my family) do this, the opposite happens. Our hearts slow, blood pressure plunges, and blood vessels dilate, so the blood goes rushing merrily to our hands, feet, and (go figure) abdomen. The world goes grey, and we faint, or wish we could.

Is there a cure? No. Are there treatments? We’re supposed to wear support hose, full-length. You try that when it’s 98 in the shade. There are pills, but they’re tricky. We can eat all the salt we want, advice my cardiologist feels funny dispensing.

Sounds fairly harmless, until you think of being stuck upright in an old-fashioned phone booth or a cave, or in front of a class giving a lecture, or talking to friends at a party with no chairs in sight. Is it a handicap? Will it interfere with a job? Should you tell an employer about it during the interview, or after the hiring is done? Or should you just try to fit in and let them figure it out the first time you fall on your face?

The funny thing is, as the experts at Johns Hopkins put it, fainting “solves” the problem by restoring the person to the position they need to be in – prone. So if you see me faint, please don’t demonstrate your helpfulness by trying to get me to my feet. Just call 911 and let me be. And before it gets to that, if you want to talk? Please, oh please, find us a place to sit down. Sitting down, I can talk with you all night.


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