When we care for someone with chronic or persistent pain, sometimes we just don't know what to say. Their experience of pain can be anywhere between annoying and frustrating to debilitating and life-changing.
Since we have no magic fix-it wand to reach for, we usually reach for whatever floats to the top of our desperate-to-make-something-better mind: a cheesy line from a movie; a sappy greeting card message, a knee-jerk cliche just to fill the air.
Anything to replace aching silence of helplessness with vague certainty and optimism.
Even with the best of intentions, those words can fall flat, backfire, or even harm.
After ten years of working with chronic pain clients, hearing their stories, and messing up a time er two myself, here's what I've learned are some of the most UNhelpful things to say.
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You don't look like someone who's in pain.
Some conditions and circumstances related to pain are visually obvious: an injured limb, a stumbling gait, wounds, scars. But many chronic cases are not.
It's an on-going challenge for those living with "invisible pain" to feel recognized and validated, let alone receive appropriate, timely, long-term care and treatment. Overtime, a nervous system can become hypersensitive to pain as a result of things like old and repeat injuries; surgical complications; mental health and trauma; compounding medical conditions; and medication side effects.
So even if pain began with something relatively visually obvious, it doesn't mean it will continue to look, feel, and operate that way. A close cousin to "you don't look like someone who's in pain" is "you don't ACT like someone who's in pain." This again assumes a lot about the person's experience based on momentary information we glean from observing from the outside.
Those living with chronic pain develop an array of coping skills. The world continues whether we are in pain or not. So just because someone doesn't portray the classic signs of pain (actively wincing, alternated gait, frequently cancelling or changing plans, cradling or protecting a body part), doesn't mean pain is not present at that moment, that day, that week, month, year, or decade.
Just because they sign up for a class, work a job, have a child, care for their aging parent, partake in their hobbies... doesn't mean the pain is gone. Perhaps they are masking and hiding; medicating or meditating; grinning and bearing it; or simply having a good day; or able to temporarily find a comfortable position. They are adapting, persevering, and still trying to be a human, despite their pain.
If you care for someone with chronic pain, trust they know their body. They are the ones living in it, every single day. And that chronic pain doesn't just go away. What it does or does not look like from the outside doesn't tell anywhere near the whole story.
Well at least...
Unless you know someone really well, and this statement is going to be followed by an really good inside joke, we should probably just eliminate this phrase from most conversations all together.
The grass being greener or the grass being browner on either side does not help what's happening to the human right in front of us.
Whatever follows this phrase is assuredly an attempt to lighten the mood, look on the bright side, or maintain hope. But it also minimizes the person's unique and in-the-moment experience.
It turns what was meant to be uplifting into a zero sum comparison game. The person in pain doesn't win by the conversation shifting away from their situation; and you don't win an opportunity to show you see them, you see their struggle, and you are firmly right there with them.
Everything happens for a reason.
Maybe. Maybe not. But pretending or asserting we know for sure, or what that reason may be, is not particularly helpful.
This cliche largely serves to make everyone else in the room feel better. When we witness the cruelty of happenstance, the unfair fickle nature of health, we want to believe suffering must be for a reason, serving a larger purpose. So that it is worthy of enduring.
It kicks the can down the road. It outsources our feelings. So we don't have to immediately or so glaringly face the grief, loss, and sorrow of unfortunate change. And again, maybe in the grand scheme of the universe there is plot, a story, a destiny. And this pain is part of that script. But for the person actively suffering, that sentiment is a bitter (and sometimes subtly shame-inducing) statement that can do far more harm than good.
What doesn't kill you, makes you stronger.
Like the last one, we often say this when we think offering a "big picture" perspective may help us better cope with the situation.
It sounds good on paper, and "stronger" can certainly be interpreted in a variety of ways. But, when someone has chronic pain, they often experience a fatiguing and tiresome battle with a daily complex condition; multiple therapies and medical interventions; and a revolving door of doctor's appointments. It's a situation that can truly wear someone down. And it can really compromise all aspects of their health. Not just physical and mental. But social, financial, and spiritual. The truth is, someone living with chronic pain is already strong. They are already fighting, doing the best they can, muddling through the good days and bad days.
Saying there's a future self that'll be stronger because of this pain can take the wind right out of their sails, not recognizing the effort and strength it takes in their daily life right now.
Ten years ago, my brother's roommate's cousin's next door neighbor had that... and this is what they did...
It's natural when we see suffering to relate and share stories. But usually, we're just adding to the mountain of information overload. And sometimes, it's simply not what the other person wants to talk about at that moment.
People are more than just their pain. And while everyone wants to be seen and supported by friends and family, it may not always be the time and place to talk about their medical issues. It's usually more productive and effective for them to discuss treatment options and symptom management with their medical and therapeutic team. When with loved ones, they may want to simply feel "normal" for a while. Talk about the weather. Sports. Their latest show binge. What's going on with you.
If someone asks for help or feels overwhelmed or uncertain about their pain, that's different. That may be a time to offer some information and feedback. BUT, ask this magic question first: what does support look like for you right now?
You may think they want to hear about your brother's roommate's cousin's next door neighbor, but what they really want is help taking notes at their next oncology appointment. You may think they want to know about an article you found while googling late last night, but what they really want is help understanding the fine print on their new medication's label. You may think they want you to bring them the latest and greatest orthopedic shoe insert to try out, but what they really want is a fifteen minute foot massage.
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So that's five unhelpful things to say. What uh... do we say instead?
I got you. Next up is: 5 Helpful Things to Say to Someone in Chronic Pain.
