When an illness is no longer invisible

My doctor swiveled in her chair, clicking through my patient history on her computer screen.

“Let’s do another heart monitor,” she finally declared, promptly scheduling the “installation” of my third monitor in two years.

After taking literal sandpaper to my chest, burning the wound with an alcohol wipe, and applying the monitor, the medical assistant advised me to cover it with saran wrap when showering and keep it on for two weeks.

Two weeks… And the only way to hide this hideous medical device is to wear turtlenecks. In the Oklahoma summer. Obviously, not an option.

I looked at myself in the mirror and realized something:

For two long weeks, I won’t be able to hide this invisible illness.

All the work I’ve done to ensure no one sees my weakness… gone.

But, then I realized something far more important:

I can use my story to encourage more women to step out of hiding.

See, I have an odd combination of competing heart defects. Neurocardiogenic syncope, hypotension, and inappropriate sinus tachycardia all combine to mean, in the simplest of terms: I faint a lot, and I pretty much never feel great.

I used to think everyone came home from work with so little energy that the thought of cooking, cleaning, or even putting on pajamas was too much to bear. I believed everyone lived in a perpetual world of freezing temperatures and headaches.

But a few months ago, when my doctor told me I was in “remission” (a phrase I previously thought was reserved for cancer), I realized I’d been on the battle field with an invisible illness. And, I’d actually made the choice to fight alone.

Does this sounds like you, too?

It’s hard. You feel sick, but you don’t have any physical signs. You’re not confined to a wheelchair, no scars exposing your battles.

And while some might argue that it’s better to lack such obvious impairment, I know it’s not that simple.

There are days when it takes all you have to get out of bed, but still, you go to work.

After all, you need to keep those vacation days for when the kids get sick. You can’t afford to use them on yourself.

You sit in the audience of basketball games or dance recitals, and your body aches. Your eyes are heavy. But you want so badly to be there, and you fight through.

When people ask how you’re doing, you answer: “Fine, thanks.” You may even say you’re great, fabulous, never been better. While inside, you’re screaming: “I’m exhausted. I’m hurting. I’m not well.”

People don’t know how to react to that kind of honesty, so you avoid inconveniencing them.

There are times when you wish others could see the invisible sickness you carry.

I know you’ve spent days wondering how you’ll make it through without collapsing, and nights sleeplessly aching.

You’ve been the person who crumbles under the weight of just one more thing. Drive to day care. Pick up the kids. Drive home. Make dinner. Feed tiny humans. Eat. Do the dishes. Bathe the children. Play. Put the kids to bed. Clean up the messes.

By this point, you’re already so exhausted that seemingly effortless things—taking out the trash, putting up your clothes, or even washing your hair—can cripple you.

And no one understands.

But, I do.

I see a woman who fights.

A woman filled with so much love that it overwhelms her. It drives her to keep going. It refuses to let her quit.

I see a woman who never complains. Even when it hurts, even when it’s too much, she never lets it get the best of her.

A woman whose whole life is centered around those she loves.

Your illness may be invisible. But, you’re not.

Don’t hide in the shadows of your exhaustion. Say no to things you just can’t do. Speak up, and be heard.

Together, we can lift each other up. We can move mountains. Sweet friend, we can be well.

We just have to stop hiding first.

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