13 Things Only Chronic Pain Warriors Truly Understand

You can’t see chronic pain, but it shapes every corner of a person’s life — like an invisible puppeteer pulling strings behind the scenes.

Living with Pain is Like Running a Marathon in Mismatched Shoes

Imagine trying to run a never-ending marathon in worn-out, too big, mismatched shoes… on gravel… while everyone else jogs by in comfort, clueless to your struggle. That’s what living with chronic pain can feel like. It’s relentless, misunderstood, and full of oddities that most people can’t imagine unless they’ve walked in those aching shoes.

In this post, I’m diving into 13 strangely common things that unite chronic pain sufferers — from bizarre sleep rituals to social tightropes. These are the things they might not talk about out loud, but if you're a fellow pain warrior, you’ll nod knowingly at every single one. Like me choosing the number 13 when doing a post that lists something, like my Sunday Quotes, Using the exact same font and logo size in each Sunday Quotes post, in each post with an image I’ve created, and me choosing 4 pics to show when sharing my blog post link on social media. 

1. We’re Masters at the Pain Scale Game… and Still Can’t Get Taken Seriously

You’d think by now we’d have an app for explaining pain — but nope, it’s still “Rate your pain 1 to 10.” These pain ratings we have to fill out don’t really apply to us. In my case, my pain just keeps increasing, year after year, and my functioning decreases, year after year, and a rating of 7/10 five years ago might only be a 4 or 5 now, and likewise a 10/10 five years ago could actually be like a 7 now. So they aren’t entirely accurate for those of us dealing with chronic pain. For Pain Warriors it is much more complex than that. I always felt like I had to explain my rating, and there was never enough room for me to do that, and it was frustrating. This is one of the reasons why when I created my Chronic Pain & Wellness Planner, with it’s daily 2 page pain tracking worksheet that includes all the oddities and quirks and important details one needs room for when they suffer from chronic pain. And it also has room for how your pain impacted your day, what the weather was doing, and how much exercise or physical activity one managed to get. All these things are really important when you are living with chronic pain. It envelopes your whole life and person you are and how that impacts you is important to take care of. 

Also chronic pain patients become fluent in downplaying or decoding pain for doctors. A “7” on their scale might leave others in tears. But after years of hurting, many learn to function at what used to be unbearable levels. It’s not bravado — it’s survival. I’ve always said that if someone were able to switch into my body for a day, after a few minutes they’d be begging to switch back to their own. I don’t even have words to describe what being in that much pain does to a person. 

Tip: Keep a detailed pain journal. It gives doctors a more nuanced look than a number ever could. Doctors like data and facts, and I have created a free printable 2 page pain tracking worksheet to get you started. To download it, and my 200 page Household Planner For Pain Warriors, head on over to my website https://meredithhutton79.com and sign up to my mailing list. 

If you like your 2 page pain tracking worksheet, but are looking for more, you can buy the full version I created of my Chronic Pain & Wellness Tracker in both colour or black and white on Amazon and Books dot by. It has room to track your pain and its impact, doctors and other medical appointments information and notes, medications and supplements, habits and even a weekly gratitude practice. I recently updated it to include labelled tabs to cut out and use to keep your pain tracker organized. 

2. We Can Predict the Weather… With Our Joints

Move over, meteorologists — chronic pain sufferers often feel storms before the forecast changes. My legs are scary accurate. 

Many people with arthritis, fibromyalgia, Complex Regional Pain Syndrome (CRPS), or migraines, experience weather-related flares. Barometric pressure drops, cold snaps, and humidity spikes can trigger pain. It’s not a myth — it's actually tied to inflammation and nerve sensitivity. I was also told early on in my CRPS diagnosis, that barometric pressure changes, contract and expand our spinal cord fluid, making diseases of the central nervous system, like CRPS, or that involve nerve endings, go haywire. It can be sunny, and the weather doesn’t say it’s going to rain, but if I can feel it, the weather is changing, despite what is forecasted. It might not be a down pour, but it is still raining and it still changes the barometric pressure. In all the years I’ve had CRPS, I’ve never been wrong about the weather. I call my legs my “Weather Legs”. Do you have the ability to predict rain with a Weather Appendage?

Tip: Track your symptoms alongside local weather patterns to identify triggers. This is easily done in the 2 page pain tracking worksheet I created. I go beyond just rating your pain. I have a list of pain sensations that can be check marked for those that apply, I have room to note the weather, and how pain impacted your day. Get specific. I leave LOTS of room for all the oddities and long winded explanations that are needed to describe your pain. 

3. We Can Sleep for 12 Hours and Still Wake Up Exhausted

It’s not laziness. It’s like charging your phone on a frayed cable — it never hits 100%. 

Chronic pain disrupts deep sleep. People wake up stiff, sore, and unrested. Even a full night’s sleep doesn’t feel “restorative.” This leads to a vicious cycle of fatigue and pain, making even simple tasks feel monumental. Since having CRPS, I’ve never felt more exhausted, even after a day of doing nothing. Just being in pain drains your energy. 

Tip: Establish strict wind-down routines and consider CBT-I (Cognitive Behavioral Therapy for Insomnia). I am working on this right now…trying to get myself into a good rhythm and routine that cues my body to sleep. For the most part I have a good evening routine, but I’m not being as strict as I should with certain parts of my routine that benefit me. My pain keeps me up at night, makes it hard to fall asleep and makes it hard to wake up.

4. We’ve Got an “Injury Resume” No One Wants to Hear

Try explaining that your pain isn’t from one big injury — but a lifetime of micro-battles.

Most chronic pain sufferers have an extensive list of diagnoses, injuries, failed treatments, and misdiagnoses. It's not drama — it's data. But sharing it can make you feel like you're listing your trauma just to be believed. Oftentimes, Pain Warriors feel like they need to justify their chronic pain, because so often it has been met with “it can’t be that bad if you are up and out of bed”, or “you don’t look like you’re in pain.” We are often not believed, or are thought of as exaggerating, and oftentimes are seen as drug seeking, when it’s not a high we are seeking, but just some relief from the constant, crazy making, pain.

Tip: Create a medical summary or timeline for new doctors to save yourself repeating it every time. It’s kind of like a resume, but for any medical professional in your treatment plan, you may be seeing. Send this to your doctor or other medical professional you are seeing, ahead of your appointment so that it can be reviewed, saving time in your appointment.

5. We’ve Perfected the “I’m Fine” Mask

Smile, nod, and grit your teeth. Chronic pain comes with a built-in poker face. We often don’t want to be seen as complaining or whining, or having it be all that we talk about. We minimize when we shouldn’t, do things that push us too hard, and that has physical and emotional repercussions that impact us further.

Because pain is invisible, sufferers often feel pressured to hide it. They’ll laugh at parties while their back is on fire or show up to work despite flares. This emotional labor can be just as exhausting as the pain itself. For the last while I have been suffering from burn out, and part of that burn out is from shoving down all the distress and trauma down deep inside me because I worry others will be impacted by it, or that I will be misunderstood and be seen as complaining or exaggerating, or even drug seeking. So I try not to talk about it too much.

Tip: Find at least one safe person you can be real with — no filter needed. I am lucky that I have a few people in my life that I can be real with, and that won’t judge me or see me as being a complainer, and not everyone is that lucky.

6. We Live by the Spoon Theory… and Non-Spoonies Don’t Get It

Ever canceled plans because you “ran out of spoons”? Then you know.

The Spoon Theory, created by Christine Miserandino, is a metaphor for limited daily energy. Pain sufferers ration their energy like currency. A shower might cost two spoons. Grocery shopping? That could take five. If you overspend your daily spoons, tomorrow's toast. To read more on the Spoon Theory, head on over to my blog post talking about Spoons and what being a “Spoonie” means. It is such an easy way to describe how we have to go about our day, things we have to think about, weigh the options and how much pain it will cause us to do something. I am constantly calculating the pros and cons and benefits to what activity I am doing or willing to do or not do, and it takes the fun out of living. It takes the fun out of planning because you just don’t know if you’ll be ok enough that day to do what you committed to do. 

Tip: Use apps or journals to help track energy usage and symptoms. I have an Apple Watch and have a subscription to Apple Fitness+, and it tracks everything I need to be tracking. I can’t go to an hour long fitness class, so doing one of Apple’s 10 minute fitness videos is perfect for me. Over the last couple of months I’ve been working up to doing 2 ten minute exercise videos a day, with one being in the morning, and one being in the afternoon. Right now I am able to do it twice a day about 4-5 days a week, the other 2 days are because i totally forgot to do the second one, or got a late start to the day so could only do 1.

7. We’re Walking Medicine Cabinets

If you name it, we’ve probably tried it — from painkillers and creams to acupuncture and yoga. 

Most people don’t realize the sheer number of treatments chronic pain sufferers cycle through. Prescriptions, supplements, heat pads, TENS units, mobility aids, physio or massage appointments, you name it. Relief is a moving target, and trial-and-error is a full-time job. I often feel like my days are dominated by managing my chronic pain, and some days are just too much. I’d love just one day to not worry about pills, appointments, or other pain management strategies, that often use up too many spoons just to do.

Tip: Always research drug interactions when trying something new. Even supplements can clash. This is especially important…one of my medications says I can’t drink grapefruit juice or the repercussions would be life threatening. So it’s important to read all the info from the pharmacy, as well as do your own research.

8. We’ve Canceled on You — and Felt Terrible About It

Flaky? Nope. Just in pain. But the guilt still hits hard. Especially if the other person is upset about it. It makes us even more upset, because we don’t want to bail on our friends or commitments, but sometimes it can’t be helped. When it can’t be helped, please show some compassion because we are beating ourselves up over it and feeling guilt and shame for disappointing or possibly upsetting a friend.

Chronic pain is unpredictable. A person might feel okay in the morning and be unable to move by afternoon. Canceling social plans often leads to isolation, and the feeling of being misunderstood or left behind. I am so lucky I have strong social connections with people who are willing to accommodate me just so that they can see me.

Tip: Set realistic expectations and keep loved ones informed about the “why” behind your cancellations. It’s important to communicate clearly so there are no misunderstandings. Navigating friendships when you have chronic pain can be tricky, so it’s really important to be honest and open about anything that could be misunderstood as not wanting to, when it’s really just your pain overwhelming you and you have to rest. For me, rather than cancel plans, I first see if they can be altered to accommodate my pain flare, as it’s not about me not wanting to see the person, but about me being ok enough to participate in our chosen activity. When my pain is really high, I need a quiet atmosphere and do better with one or two people.

9. We Time Our Days Around Pills, Heating Pads, and Pain Windows

It’s not “just take a pill and go.” It’s a dance between timing, triggers, and side effects, as well as how long that pill takes to kick in so you can go about your day. 

Pain management isn’t one-size-fits-all. Many sufferers plan their days meticulously around medication windows, when pain peaks, and which activities cause flares. It's like planning life on a tightrope — one misstep can wreck the day. I mostly plan my days around when I take my pills, my exercise and meditation routine in Apple Fitness+, and pacing myself so that I don’t crash. I also use a heating pad and have a back massager I use daily.

Tip: Set phone alarms for meds and recovery breaks to stay ahead of pain instead of chasing it. I have an Amazon Alexa I’ve programmed to prompt me for certain chores, activities and self care throughout the day, and it works really well. My meds are taken at certain times of the day and are not on an as needed basis, so having my Alexa or phone prompt me is a life saver.

10. We Get Medical Gaslighting — A Lot

If you’ve ever heard “It’s just stress” for the fifth time, you’re not alone.

Many chronic pain patients, especially women, report being dismissed by doctors. Symptoms are often chalked up to anxiety or depression or flat out told it’s all in our heads. While mental health is crucial, the physical pain is real — and deserves real attention. When I broke my ankle, my family doctor was away. The hospital was no help (they misread my x-ray and missed the avulsion fracture), and it started to spread within weeks of my injury. I went to 3 different clinics and back to the hospital, and the doctors I saw didn’t even want me to take off my air cast to look at my ankle. I was told it was normal, to stop complaining, and that ankles take time to heal. They didn’t seem concerned when I said the pain was spreading and made it out like I was crazy and making it up. By the time I was able to see my doctor, it had spread to both my legs. Thankfully my doctor knew what was going on, and I was diagnosed with CRPS as soon as I saw him. But I always wonder what would have happened if my break was treated properly and I was given adequate medical care when I tried to get help. Would I have gotten CRPS? Would it have spread, or spread as much? Would it be as aggressive and hard to treat? I try not to get hung up on this thought cycle, but some days it hits me more and I can't help but wonder if our lives might have been different had I received timely and adequate medical treatment.

Tip: Bring an advocate to appointments, or request your records to double-check what’s being noted. This is SO important if you don’t feel like you can advocate for yourself. Chronic pain needs to be addressed, and sometimes you don’t have the energy to fight for the treatments and medications you need when your doctor is not on the same page and unwilling to treat your chronic pain.

11. We’ve Got a PhD in Body Language and Micro-Expressions

Pain makes you hyper-aware — of your body and other people’s reactions to it. Your body is always in fight or flight mode and looking for things that could cause pain and that’s not a great way to live. When light touches or stimuli touch my legs, it causes a severe sharp pain that then sticks around for sometimes up to an hour. Things like someone touching my leg or bumping my legs cause extreme pain and it makes me jumpy and scared that something is going to cause more pain. It makes me want to cry out in agony, but I don’t, so that I don’t upset or make the other person feel bad. Pain Warriors often don’t show their responses to pain, and that has an impact on us. 

Additionally, pain sufferers often scan faces for judgment, sympathy, or signs of disbelief. They're finely tuned to tone, posture, even pauses in conversation. Living with pain teaches emotional intelligence… the hard way. 

Tip: Use that awareness to advocate for others, too — empathy is a superpower. The more we advocate and educate each other, the better off we will be.

12. We Measure Success in Tiny Wins

For Pain Warriors, “I showered today” can be a triumph. Same with getting dressed or cleaning the bathroom. 

Pain sufferers have to redefine success. It’s not climbing mountains — it’s doing laundry without collapsing. It’s showing up for a commitment while surviving another flare. Or making dinner after a hard day. And while society might overlook these victories, they mean everything in our world. When everything is so much harder to do, and causes extra pain, these little wins are actually big wins. 

Tip: Keep a “win list” on tough days to remind yourself how far you’ve come. I keep track of my chores, activities and commitments on my phone in a to do list app and at the end of the day I go over everything. Usually when I look at the list, I feel like I’ve accomplished lots.

13. We’re Incredibly Strong — But Tired of Being Told So

Yes, we’re resilient. But sometimes, we just want to scream. Or to cry and breakdown. 

It’s lovely to be called strong — but it can also feel like pressure to keep silent. Sometimes chronic pain sufferers need space to be vulnerable, to fall apart, to say “this sucks” without a silver lining attached. Sometimes we just need a safe space to express our sadness and distress and be told things are going to be ok without judgement or offering advice. I tend to go quiet when I’m in distress, and that looks like strength or that I’m ok. Only those that know me know what it means. 

Tip: Allow space for bad days. Strength isn’t about always being okay — it’s about continuing anyway.

The Unseen Army of Warriors

Living with chronic pain is like fighting a war no one sees, using weapons no one understands. But for all its hardship, there’s also wisdom, grit, and deep empathy. Whether you nodded through this list or just got a glimpse into someone else’s world, one thing’s for sure — chronic pain warriors are some of the toughest, most compassionate souls out there.

So if you’re reading this in the middle of a flare, in bed with a heating pad, or just trying to get through another “normal” day, here’s your reminder: you’re not alone in this journey and it would be my pleasure to join you on yours.

Do any of these resonate with you? Do you have anything to add to the list? I’d love to hear from you. 

Remember, keep fighting — softly, slowly, and on your terms.

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