What should one say to someone with a chronic illness or one who suffers from chronic pain?
Actually, before we go any further, there’s a catch: I’m not going to go in to what you should/shouldn’t say when someone is first diagnosed. I’m talking about what you say after months, possibly years of seeing and hearing the same thing almost daily, at least in high frequency. What do you say about the constant ups and downs or worse, what do you say in instances where chronic pain or chronic illness has become a big downward spiral?
It’s exhausting, right?
As human beings most of us we have a few basic instincts. One of these is
kill or be killed the instinct to protect, whether that means protecting ourselves or protecting our loved ones. When the person you love has a chronic illness that’s interrupted the life you’d planned together; when they not only suffer from chronic pain, they have days where it’s unbearable for you both. Even worse, you know you’ll never be able to take away, which forces you admit the one thing almost everyone hates to admit: you’re helpless.
You desperately want to make things better. You want to make them okay pretend that it’s just a tiny bump in the road. And then it enters, stage right: the inspirational quote.
I can get behind some of these when I’m having a good day. I mean, it’s better than being depressed 24/7. When I’ve posted on the company’s social media pages, chances are, you’ve seen a few of them. I make no apologies because there are days some of us need reminders to look on the bright side.
What is it about chronic pain/illness that healthy people don’t understand?
On the seriously bad days, you’d be smart to do one, some or all of the following: duck, cover, run, and/or drive far, far away. Why? Telling someone with a chronic illness, ‘The only limitations are those you place upon yourself…’ may cause your chronic pal/lover to
whack you in the face… with a chair… retreat in to their own world and no, you will not be welcome. Chronic illness, possibly to an even greater extent if chronic pain is also involved, makes most things a chore. Even most positive people will fall in to a funk where all we see is a ‘worst case scenario.’ You may understand on a purely educational level. The emotional, physical and spiritual one? Even the most empathetic people often cannot unless they’ve been there.
It isn’t what you say, it’s how you say it… Oh, and when you choose to do so.
Here’s the thing: as someone with a chronic lung condition, I admit that there are plenty of ways I’ve learned to navigate certain situations so that I can do the things I love. I ski. I surf. I travel frequently. I love flying in small, private planes where, frankly, there’s no where near the ability to help if things suddenly go bad. All the same, it’s important to inform people that the way(s) in which I work around my lung problems now, may not be the best thing for my future.
If you saw me wandering down the street, you’d never know I was given crappy lungs. Um, I didn’t even know I had crappy lungs until a few years ago. When I’m doing well, I can take my inhalers or breathing treatments and you’ll be none the wiser because I likely haven’t told you. On the other hand, if we interact on the regular, you’re probably on the ‘need to know’ list… which has, I’ve realized, grown to now include the many internet strangers reading this post. Yikes.
Progress and positive thinking only goes so far.
I’d love to tell you that I’m always sunshine-y and optimistic, crappy lungs or not. Of course, I’d be lying. The thing is, mot people don’t know what it’s like to have 6 bouts of pneumonia in 1 year. Whatever dreams I had for my future at that time, certainly weren’t dreams with that kind of illness factored that in to the equation.
If we want to look at the the positive, being holed up in bed for so long made me a better writer and artist… Even a better photographer. You have to get pretty creative when you can’t roam far! Unfortunately, the negative (aside from the super obvious stuff) that really stung was watching a year of personal training—working to the point I was in the best shape of my life—all to watch as it went out the window. I’d just start to get back in to a groove and I’d be knocked down again. Then again, perhaps being in the best shape of my life is why I’m still here, sharing pieces of my private life with you.
So, what should you say to someone who has a chronic illness/pain or disability?
Aka: A day where we may not be fun, (some of us may be utter monsters at times—sorry!) a day where you don’t expect us to answer the phone, pick up dinner, or anything else. Maybe we’ll want you to hug us. Perhaps we won’t. Try to roll with it, please?
It isn’t that we’ve given up. Is isn’t that we want to disappoint you, hurt you, or seek your sympathy. We’re exhausted and our battery is drained like so many of those iPhone 6/6+ that never seem to hold a charge.
Being positive is something that I, and certainly many others, work at every day. That is a choice. We’ve worked through our feelings to the point that we figure being positive is perhaps the one thing we can do, aside from the obvious therapies (if there are any) related to our conditions. Just remember, even the strongest people have a breaking point. They may put themselves back together and move forward, but that breaking point will come. It’s essentially a matter of when.
Be kind, always.
The next time we tell you, or if you’re the one living the chronic life, the next time you feel like you can’t handle it anymore, just have a day. Whether you need to head off to that private beach spot you’ve claimed as your own or you need to curl up under the covers or you know… even build a pillow fort (hey, why not?) do it. Take a day to simply be. Process what you need to process. Turn off the phone. Leave the laptop in a room as far away as possible. What you do after that is all up to you.
It isn’t weak to show vulnerability, nor is it weak to tell people you just need time to deal with whatever it is that’s going on. Maybe we’re strong, maybe we’re not… all I know is that we’re getting through life as best we can. Often that means, one day at a time. That’s it. Just remember: one day at a time.