I’ve Been In Pain For 25 Years. This Is What No One Tells You.

I will be 40 in just a few short months, and I’ve lived in pain, sometimes completely debilitating pain, for the last quarter of a century.

I have a spine disease that is an advanced version of adult degenerative disc disease. I was diagnosed with the juvenile version — juvenile disc disease — when I was a teen, and it has progressed like a wildfire inside of my body throughout the years.

Living with chronic pain for 25 years has left me feeling used up, exhausted and “old before my time.”

When I say I know pain, I know it more intimately than any partner I’ve ever had. I know its folds and curves; I know the sound it makes buzzing through my body; and I understand the minute nuances in the various types of pain my body endures.

The structure of my spine is beyond compromised, and living with an invisible disease truly shows you how little anyone else is prepared to live a life of disability or how little the general public cares. How the systems in place that are set up to “help” us (i.e., health insurance) are really hellscapes of phone calls, letters and tearful pleading to be heard, all so you can receive appropriate and adequate care.

It isn’t a life I would wish on anyone. And yet, I’ve been able to push through and function during some of the most insanely physically painful moments in my life. Now I want to share some lessons I’ve learned with you.

People have their own lives and will forget you aren’t “normal.”

They will see you living a life and sharing joy and helping others and forget that you have a limited capacity to “do.” They will get irritated, annoyed and frustrated if/when you have to cancel plans or you are unavailable to meet up for a while.

It’s easy to begin to feel unimportant when your friends and family can’t remember something so serious about you, but people who aren’t in pain can’t even begin to fathom living this way for any period of time. Of course, they’re going to forget. They stub their toe or break an arm and after a short stint, they’re right as rain again. Why can’t you be like that, too?

It’s certainly frustrating to have to remind people of your limitations, but it’s imperative to not get caught there. Everyone is just doing their best based on their own experiences. You’re doing your best, too. Being a human is hard, and everyone is dealing with their own unique set of challenges.

Living in pain never gets easier but it does change.

In the beginning, the pain is all you can focus on. It’s the only thing that matters because it’s new and it’s awful. It takes every ounce of strength to shoulder through, and it’s a battle to simply get through each day.

As time goes on, the pain becomes a white noise. You register it, it just no longer consumes you. At least, this has been my experience over the last 25 years. You start to pay attention when the levels elevate past your new threshold. When the buzz becomes a stabbing or a throbbing or a fierce electric current or something equally as awful to feel consistently, then you take a beat to reassess the deal you have with your pain.

Life loses a lot of its color.

When you’re in pain this long, life stops being a thing that’s enjoyable. Sure, there are joy pockets, moments where joy pokes through and you are genuinely laughing and smiling, but most of the time the vibrancy of life is lost to the dull grays of depression.

You fight against this for as long as you can. But it comes for you. You learn that valuing and prioritizing sleep and the comfort of your bed far outweighs staying out late with friends and paying the pain tax in the morning.

You’re exhausted all the time.

A person who doesn’t live in pain will never understand the complete and utter exhaustion that someone steeped in it feels on a daily basis. People won’t understand why you crawl into bed at 8:30 p.m. or why you can’t stay out late. It’s frustrating for them, but they have no idea how much worse it is for you. You have to learn to put the constant FOMO on the back burner in your brain, otherwise you’d go a little crazier with each passing day.

You end up only having so many spoons in the day, because as it turns out, living in severe pain wears you down.

You’ll miss out on a lot of life.

This is perhaps the hardest of them all. If you’re living a life filled with pain, and that pain is chronic, you’ll miss out on so much life. You’ll miss birthday parties, and get-togethers with friends; you’ll miss events, traveling and even just the everyday minutia of it all.

While others are laughing and enjoying themselves in the world, you’ll be lying in bed, dissociating in front of the TV, hoping and praying for relief. You’ll do your best, though, and many times people won’t see that. Sometimes, people won’t believe you, and you have to learn to be OK with that — to not get caught up in defensive mode. You’ll lose friendships and relationships because people just can’t understand that sometimes you are capable of doing incredible things, and sometimes, well, you just aren’t.

People don’t know what to say or they say the wrong thing, or worse — they gaslight you.

People just don’t know what to say. It could be a coworker, a friend or a family member, even the person closest to you, and they’ll fumble the words when they matter most.

I remember hearing some version of “Everyone has pain” or “I have back pain, too, so get over it” my whole life, which now just means I gaslight my own pain and experience. I will push too hard and too far all because I don’t think it’s “that bad.” But guess what? It is that bad.

We live in a society where we don’t talk about the bad shit, and if we do talk about it? People think we’re attention-seeking or they actively look away. We haven’t primed our culture for deep, painful conversations, for just being there for another person in their time of need.

We can’t fault humans, and the people closest to us, for not knowing what to say. We can, however, bite back when we’re gaslit. Sticking up for ourselves whether that is with a medical professional or a friend who seems to think it can’t be “that bad” is sure to provide a boost of self-confidence, right after drowning in shame for speaking up for your needs.

You will have to befriend your body over and over again.

It won’t do you any good to make an enemy out of the house you must live your life in. You might go through waves of self-hatred and loathing because you can’t do what it is you think you should be able to do, or what you used to do, but it’s really important to befriend your body.

It’s hard enough to deal with all the gaslighting you’ll receive from friends, family members and even medical professionals. The last thing you want to do is be so incredibly hard on yourself that you lose all motivation to do anything at all.

Please. Make friends with your whole self because when you have really terrible pain days, you can give yourself the grace you’re absolutely going to need to slow down, to move softly and to rest. There’s no need to berate your body because guess what? You can’t control this.

If you’re on this journey, keep going. I know it’s difficult, trust me. I know there are moments when you want it all to end, when you feel like you’re drowning and can’t keep up. Keep fighting.

But also, remember to give yourself the grace to rest, to walk the fine line between grit and softness, to know that this, too, shall pass, until it’s just a white noise that comforts you on a long drive home.

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