One of the hardest things about living with chronic pain isn’t always the pain itself. Sometimes it’s trying to convince someone else that what you’re experiencing is real.
Maybe you’ve heard, “But you look fine.” Or, “You’re still dealing with that?” with the emphasis on still. Or maybe you’ve walked into another appointment wondering whether anyone in the room actually hears you.
When that happens often enough, you can start to feel very alone, even though you’re part of a large community of people going through similar struggles.
That’s one reason I want to spend some time on pain basics right now. September is Pain Awareness Month, and maybe awareness needs to begin with something simple.
Pain is real.
It’s so true, and yet it’s so often forgotten, ignored, or dismissed. The impact of pain is usually much bigger than what’s visible to other people.
One Voice for Pain
Every September, organizations like the US Pain Foundation recognize Pain Awareness Month. This year their theme is “one voice for pain,” and I love what they’re emphasizing: all ages, countless diagnoses, millions of stories, one movement.
Because chronic pain doesn’t belong to one kind of person. It isn’t one diagnosis, it doesn’t look one way, and it doesn’t follow one story. Everyone is different.
The US Pain Foundation estimates that more than 60 million Americans are living with chronic pain. And that number doesn’t include the people caring for them.
Here’s the strange part. Something experienced by that many millions of people can still feel deeply lonely.
What People Don’t See
Most people living with chronic pain have experienced some version of this. Someone asks how you’re doing. You say, “I’m okay.” Maybe you even laugh. And they look at you and think, “They look pretty good to me.”
What they don’t see is what it took to get there. They didn’t see what happened before you left home. They didn’t see what you had to say no to that week so you’d have enough energy to say yes to this.
When Jim and I were living a bit outside of town, I would plan for days just to make a trip in. That’s hard for people who aren’t close to someone in pain to understand.
This is why awareness matters. What you see isn’t the whole story. Looking okay and being okay are not the same thing. And when it comes to pain, they’re seldom the same thing.
The Pain of Not Being Believed
There’s another part of this that hurts deeply: not being believed.
Maybe you’ve tried to explain what pain is like to a family member, a healthcare provider, an employer, or a friend, and the conversation left you feeling like you had to prove you were hurting. Sometimes it goes further than that, where you feel like you have to prove you’re not exaggerating, or misusing medication, or overusing appointments.
I remember those feelings well. I started wondering, am I explaining this wrong? Do they think I’m exaggerating? Do they believe me?
After enough of those experiences, I just stopped talking about it. And that made the isolation worse, because now I wasn’t only carrying the pain. I was carrying it alone.
So I want to say something clearly to anyone who’s experienced that.
Your pain does not become less real because someone else doesn’t understand it.
All pain is real, whether or not another person accepts it.
What a Number Can’t Tell You
We’ve all been asked the question: on a scale from zero to ten, what’s your pain level?
There’s a reason providers ask it. But there were plenty of times I wanted to answer, “Well, do you have a few hours?”
Sometimes just knowing that question was coming made me focus more on the pain. And honestly, how do you compress more than 20 years of pain into a single number?
Pain isn’t only “how much does it hurt.” It’s also: What have I stopped doing because of it? How am I sleeping? What’s happened to my relationships? Can I work? Can I concentrate? How much am I afraid to move? What am I missing out on? What am I worried about? Who am I becoming?
Those questions tell you something a number never could.
Pain Happens to the Whole Person
Pain is never just a physical experience. It’s a whole-person experience. If we only focus on the pain sensation, we miss the person experiencing it and everything that comes with it.
Pain also happens in relationships.
For more than 20 years, I was the one experiencing chronic pain. But our whole family was living with chronic pain too. Not physically, but they were living with what chronic pain was doing to our lives.
There was uncertainty. Where is this going today? This week? This life? There was fear. There were times Jim didn’t know what to do for me.
That’s something we often miss when we talk about the impact of chronic pain. There’s the person hurting, and then there are immediate family members, extended family, friends, caregivers, coworkers. Entire circles of relationships adapting around something they didn’t choose either.
That’s why the US Pain Foundation intentionally includes caregivers and care providers in its work. Chronic pain reaches far beyond the individual experiencing it.
What Real Awareness Looks Like
Awareness can’t simply mean knowing that chronic pain exists.
For the people supporting those of us in pain, awareness might mean changing how they respond. Instead of “Have you tried this treatment?” or “Have you tried this supplement, I hear it’s really good,” they could say something different:
“Tell me. What has this been like for you?”
That question is about the person, not about the condition. Instead of immediately offering a solution, they simply listen.
Awareness for Us Too
There’s another side to this. For those of us living with chronic pain, I don’t want Pain Awareness Month to be only about getting other people to understand us better. It’s also important that we understand ourselves better.
That means returning to some basics. What actually is chronic pain? Why can pain continue even after tissues have healed? What role do the brain and nervous system play? Why can fear, stress, attention, movement, sleep, thoughts, emotions, and even our environment influence our pain experience?
Those were the things I learned, and that knowledge made an enormous difference in my journey. After 21 years of unmanaged chronic pain, learning these things changed everything.
Most importantly: if pain is influenced by more than what’s happening in our tissues, what possibilities does that open up for us?
A lot. Because understanding pain isn’t just interesting information. Understanding pain changed the way I responded to it, and eventually it changed my life.
So Pain Awareness Month isn’t only about making everyone else more aware. Some of that awareness is for people like me. People in pain.
Millions of Stories, and Yours Is One
There’s a part of this year’s theme I especially appreciate: the focus on the fact that there are millions of stories. Behind every statistic is a real person, and no two pain stories are exactly alike.
That’s one reason we’re beginning to include more conversations on this channel with people who have lived experience with pain, along with caregivers, providers, and researchers who see pain from different perspectives. We can learn from one another.
The US Pain Foundation emphasizes that those of us with lived experience can help educate others, challenge misconceptions, influence research and policy, and help another person in pain feel less alone.
I believe that. Your story matters. Not because it needs to be dramatic, not because you have everything figured out, and certainly not because it needs to look like mine or anyone else’s. It matters because this is what pain looks like in a normal human life. The more willing we are to listen to one another, the less alone we all become.
So if you’ve felt dismissed, misunderstood, unheard, or you’re simply tired of trying to explain something nobody else can see, remember this. There are millions of different pain stories out there, and yours is one of them. You are not alone.
Maybe one of the most important things we can do this month is listen to each other’s stories.