What is living with chronic pain really like? For a lot of us, it is much more than the pain itself. It can mean grieving the person you used to be, never knowing how your body will feel on any given day, wishing people would believe you, feeling a huge sense of relief when you meet someone who gets it, and holding on to hope that something will make a difference. If any of that sounds familiar, you are not the only one.
I recently read an article from the U.S. Pain Foundation, Different Diagnoses, Same Struggles: 15 Experiences People With Pain Share. As I went down the list, I kept thinking, yep, that’s me. That one too. Some of them took me right back to the long years when my pain was unmanaged and took up so much of my life.
I don’t want to go through all fifteen here. I want to talk about five of them, because each one reminds me of something I wish I had understood when my pain was at its worst.
Grieving the Person You Used to Be
The first experience the article names is grief. When chronic pain comes into your life, you don’t only lose activities. It can feel like you’ve lost a whole version of yourself. Maybe it’s the person who traveled, or the one who took care of everyone else. For me, it was being a mom who could pick up my daughter. It’s the person who could make plans without first checking with their body.
For a long time I compared myself to the old Debbie. I used to be able to do this. I used to be able to do that. Every comparison seemed to say she was the better version, and the woman I was now was broken and failing. Those comparisons hurt.
What helped me was a different question. Instead of asking how I could get the old Debbie back, I started asking who I could grow to be. The first question kept me staring backward at everything I had lost. The second let me get curious about what was ahead.
That doesn’t mean we skip the grief. We had something that mattered, and it changed. Those losses deserve to be grieved. But grief doesn’t have to be the end of the story. You can honor who you were without giving up on who you’re going to be.
Never Knowing Which Body Will Show Up
The second one, I think many of you will recognize right away. You make plans on Tuesday for Saturday, but Tuesday Debbie has no idea what Saturday Debbie is going to be able to do. The article describes it as never knowing which version of your body is going to show up.
It makes planning anything hard. If I go, will I be able to do anything tomorrow? Should I cancel now, or wait and see? And when we do cancel, it is so easy to call that failure.
The article offers another way to see it, and I like it. Sometimes adjusting the plan is part of taking care of yourself, not a sign that you failed. Adapting is not the same as quitting.
There were times I needed to respect what my body was telling me. There were also times when fear was keeping me from trying anything at all. Learning the difference took time and patience. Either way, beating myself up never helped.
So maybe you need to hear this today. When you change a plan, sometimes you are listening to your body and adapting. Sometimes you are choosing a smaller step. And a smaller step can be a profound baby step. Around here, those count.
Wishing People Would Just Believe You
The third experience is one so many of us share: wishing people would simply believe us. The article talks about people being told their pain was all in their head, or feeling like they had to defend the reality of their own bodies.
Maybe you know what it’s like to rehearse what you’ll say before an appointment. How do I explain this so they understand? How do I show them how bad it really is? And sometimes it isn’t a provider at all. Sometimes it is someone you love, who just can’t see it, because there is nothing obvious to see. Pain is often invisible.
We can do our hair, put on a little makeup and smile. We show up at a dinner looking pretty good, and someone says, “You look great.” And inside you’re thinking, if you only knew what it took to get here. Looking fine and feeling fine can be two very different things, and hiding how you feel takes real effort.
Here is what I want you to hold on to. Just because someone doesn’t understand your pain does not make your experience any less real. You don’t need another person’s complete understanding for your experience to matter. At the same time, we do need people. Which brings me to the next one.
Finding People Who Finally Get It
Number four might be my favorite. It is what happens when someone living with pain finally meets another person who gets it. That might be in a support group, with a coach, online, or with a friend who has been on their own pain journey.
You start describing something, and instead of having to defend it, they nod, because they’ve been there. And suddenly you realize you’re not the only one. The article says connections like these can give us more courage, help us feel like we belong, and even help us live with more purpose. Sometimes that is where hope starts to come back.
I see this in our support group. Someone shares something, and another person says, “You deal with that too? What have you tried that helped?” Then others jump in. Their pain levels may not have changed, but something important has. They don’t feel so alone anymore. Not everything that helps comes from someone who can make the pain go away. Some of it comes from someone who can say, I understand.
That is one of the reasons we’ve been sharing more lived experience interviews on our channel. Roy’s story doesn’t look exactly like mine. Michele’s involved autoimmune disease. Jim’s came from the caregiver’s side. Different stories, different diagnoses, and yet we keep finding the same struggles, and sometimes the same hope.
Holding On to Hope
The last experience is holding on to hope that something will finally make a difference. The article draws a line here that I really appreciate, between recovery and resilience. Recovery can turn into a desperate search to get back to who you were. Resilience is about moving forward as the person you are now. You are changed by your health challenges, but you are not less than who you were.
For years I waited for someone to find the one thing that would take it all away. What we often call the silver bullet. What I learned instead was that I didn’t have to wait for someone else to do it for me. Hope and real life came from realizing that small, profound baby steps can add up.
I could focus on practical things I could do each day, like https://painintherearview.com/blog/pacing-chronic-pain/pacing, making healthy food choices and practicing relaxation. I could feel difficult emotions without letting them run my actions. I could be kind to myself instead of blaming myself for everything. I could remind myself during a flare that it was temporary, and that it was also a chance to learn what helps and what doesn’t. Pain stopped being the only thing I was working on. I started working on my life.
You Are Not the Only One
Maybe your diagnosis is different from mine. Maybe you’ve lived with pain for thirty years, or maybe it only started recently. Maybe you are still waiting for answers about your condition. I hope it brings you some comfort to know that other people understand the grief, the unpredictable days, the frustration of not being believed, the loneliness, and the hope that tomorrow can be better.
Our diagnoses may explain something about our pain. They don’t tell the whole story of who we are, and they certainly don’t decide who we can grow to be. That’s what we’re about here at Pain in the Rear View. Not pretending pain isn’t real, but learning to live in a way where our pain isn’t in charge.
Which of these five do you identify with most? I’d love to hear from you in the comments on the video.
