My One Secret Truth I Want People to Know About Being Sick

If there were one secret truth I could tell others about being sick, it would be that every nasty thing that you say, or even semi-nasty thing you say and do, sticks with us. Even when you think you are phrasing words in the nicest way possible, we know what you mean. The worst thing about those words is that we save them, and we hold them with us when we are too sick to get out of bed.

Those words and moments might be what we snuggle up with when we miss our kid’s plays, when we can’t make it to work again, when we miss another big family event. It’s like a record on repeat, and our confidence is shot: we’re not worthy. Your words, your eye rolls, your side glances, that’s what we hold in our hearts, no matter how much kindness we receive to wash it away.

I’ve received more kindness than I can describe, but I’ve also received some nastiness, and no matter how much I try to forget it, no matter how much I try to pretend it didn’t happen, it’s impossible. It’s like a weight and balance. The bad is stronger than the good, if only because it’s so damaging to the weakened heart that has had to face so much.

I’ve heard, “Are you sure you wouldn’t feel better if you didn’t take all that medication?” So, every time I take my prescribed doses, I doubt myself. I wonder if I’m hurting my family, myself, everyone, by taking my medication. I have stopped taking it and ended up in the hospital in so much agony that I couldn’t move, which was certainly worse. Thanks, “kind” and well-meaning person whose own business you should’ve minded.

I’ve heard, “Are you sure you really needed that first brain surgery?” as I scheduled an appointment with my neurosurgeon for my second one. That same person said, “I mean, obviously you probably don’t need this one either.” I’m not sure neurosurgeons hand out brain surgery so indiscriminately, but I’m sure I needed the first one, and that I need this second one, but thanks for telling me you doubt me. It makes me feels great to know that every time you see me lie down or miss something, you are there, sitting cross-armed and mumbling under your breath, “Ugh, again with the headaches!”

I’ve heard sugarcoated comments like, “Well, you seemed fine yesterday; why you are so miserable today? Can’t you just take some of your medication or something?” In this person’s eyes, I was either faking yesterday or today. And worse, this person thinks it can be fixed with a few pills that either I, or she, has assigned curative properties to. In other words, she doesn’t believe I have a permanent, degenerative condition.

I’ve seen more side-eye glances and eye rolls than I can count when I walk with a cane one day and then leave it home the next. To me, a day without the cane is a victory. To them, leaving it home means I was faking the day before; or worse, that it was a ploy for sympathy, not that I was petrified of falling down on unsteady ground. But when you look at me with an eye roll you maintain just long enough for me to see, it makes me feel, not that I’m not making the best decisions to protect my health, but that I’m a malingerer, and that I should just stay home from the events I can actually make it to, regardless of my cane.

Worst of all, I’ve been abandoned by friends I’ve known for years, friends who simply either didn’t know what to do or say, or who simply vanished. These hurt the worst of all. They just disappeared. I believe many people with a chronic illness have had this happen. That sting never, ever heals.

So, the secret truth I want others to know is that you wield an amazing power to hurt people who are already hurt. Your words and actions can cause immeasurable pain and suffering.

However, you can cause the exact opposite, too. A simple phone call, a card, a few kind words. Just sitting quietly with us can lift our spirits more than you know.

Follow this journey on Chronic-rachel.com.

The Mighty is asking the following: What’s one secret or truth you wish you could tell others about your experience with disability, disease or mental illness? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.