This post appeared on TheMighty.com, a website that finds strength, joy and beauty in disease and disability.
Wouldn't it be nice if we could just write a letter to the world, expressing everything we're too polite to say, and that could be the end of all our awkward encounters? Well, a gal can dream, right? Yet things aren't usually so simple in real life. Actually, things tend to get quite messy when you're a parent with a chronic illness (or two, if you're like me).
We chronically ill folks have years of experience dealing with unknowingly rude comments. But something changes when you become a parent. All of a sudden, the harmless jokes and insensitive remarks hit us harder and deeper because we are already painfully aware of our limitations and what we can and can't do with our children.
So to all the well-meaning friends and family, here's a list of the top five things you should probably not say to a parent with a chronic illness:
1. "But you look fine!"
Unless you want to receive a death stare that could burn a hold through even the thickest slab of marble, keep this one to yourself. While you may mean this as a compliment, saying "you look good" is invalidating. You're basically implying that because they don't physically look sick, they must be fine. For most people with a chronic illness, this is usually far from the truth.
2. "It could be worse."
Sure, it could be worse. A meteor could crash through the roof while we're talking. Wait, no, maybe that's a good thing. Regardless of how you "meant it," this one again comes off as rude and minimizes the chronically ill person's situation. A good rule of thumb is to put yourself in their shoes. If you just told someone about a bad or difficult experience and that person responded with, "It could be worse," wouldn't you feel hurt by that?
3. "Do you ever regret/wish...?"
Sadly, this is something that has been said to me more times than I can count -- which is crazy when you consider that one time is too many. Even if you genuinely think that not having a child would make things easier for this person, don't say it. Sure, if I'm being embarrassingly honest, there are times when I daydream that I'm on an island somewhere, relaxing pain-free, with unlimited lives on Candy Crush. But I don't for a second wish I wasn't a parent. Although not being vaguely sticky 24/7 would be nice.
4. "Have you tried...?"
Yes. Whatever it is you're about to name, yes. We've tried it and a hundred other things and nothing has worked. Whether it's trying to find an easier way to be physically active with our kids or endless amounts of Google searches for cures to whatever ails us, chances are we've been there and done that. While you may be trying to help us brainstorm the perfect solution, here's a little something that may blow your mind: even healthy, average parents with healthy, average children run into challenges with no clear, easy solution.
5. "What can I do to help?"
Actually, just kidding, this would be amazing! You may think we're invincible superheroes who can do it all, but that's just a front we put on because if we didn't we might not want to get out of bed. So even if you think that offering help could be demeaning or intrusive, please do it anyway. And to all the people out there who can see through our hard exteriors, thank you. Thank you for listening and thank you for supporting us.