If you’ve never experienced life with chronic pain, it can be hard to understand what it’s really like. Unfortunately, this sometimes leads to a lack of support — and even a lack of empathy — for people going through it.

We reached out to people in our Facebook communities who live with chronic pain and asked them to share one thing they wished others understood about their condition. After reading the responses, the need for increased awareness, validation and overall kindness is obvious.

Here are just some of the things people with chronic pain want you to know:

1. “It’s real.” — Marcia A Johnson

2. “Even on a really bad day, I do as much as I can. I smile, I try to look as human as possible! I try to hide how I am feeling both to stop you from feeling uncomfortable and help me feel better. This does not mean the pain is not there, and even though I have been doing this for years, it is tiring, hard and frustrating. So please try to understand, and think before you make a flippant and hurtful comment.” — Nicky Treagus

3. “Yes, just touching me hurts.” — Stephanie Horton

4. “If I back out on plans at the last minute, I’m not flaky. I just can’t predict how I’m going to feel day to day.” — Brandy Horrell

5. “Please know I appreciate your concern and caring, but I don’t need to know about the ‘latest cure’ or your questions about ‘have you tried this vitamin or that breathing exercise’ for my illnesses. Believe me, I’ve tried them.” — Zoann Murphy

6. “I absolutely do not want your pity. What I do want is your love and acceptance.” — Angie Glenn

Pink heart background with text "I absolutely do not want your pity. What I do want is your love and acceptance." Angie Glenn

7. “Being at work doesn’t equal being ‘healthy’ or pain-free. Yes, physically and externally I am at work, but on the inside, I am engaged in an all-out war to handle doing what I have to do.” — Tabitha Hodges

8. “‘Faking it’ is harder than you think.” — Ashley Mould

9. “Just because I’m 18 doesn’t mean I’m ‘too young’ to be chronically sick. It can happen at any age.” — Rose Hymers

10. “My use of pain meds is not an addiction or a leisurely pastime. It is a necessary survival tool so I can get through my day and live the life I deserve.” — Kate Sytsma

11. “It’s not all in my head. Just because you can’t physically see my pain doesn’t mean it isn’t there.” — Tierra Sprague

12. “‘Well, you look great!’ is not an acceptable answer when I tell you I’m not doing well.” — Nicki Finlayson

13. “Chronic pain doesn’t only involve pain. Insomnia, nausea, vomiting, depression, brain fog, irritability and more are also par for the course.” — Shayna Leeds

14. “When we have a bad day, please be patient and know it doesn’t last forever. We want to have good days, too.” — Cindy Garden

Storm clouds on ocean with text "When we have a bad day, please be patient and know it doesn't last forever. We want to have good days, too.” - Cindy Garden

15. “My pain level can change hourly.” — Mary McCabe

16. “If you think it’s annoying hearing about it, try living it! ” — Tracy Boyarsky Smith

17. “Don’t be mad at me because I can’t be the person I was before. Don’t judge me because I can’t work anymore. Don’t assume I’m lazy. I do the very best I can with the cards I’ve been dealt.” — Patricia Howarth Andersen

18. “You may forget I’m in pain after a while, but I can’t ever forget.” — Haylie Stewart

19. “Chronic means persistent, longterm. It doesn’t just go away. It’s always there. Some times are better than others, but the pain is always there.” — Rachel Higginson

20. “Just because you’ve lived with it for years doesn’t mean the pain is any less over time. You just adapt [and find] new ways to survive it.” — Valma Ashpaugh

21. “If thinking ‘positive thoughts’ would make it go away, I’d already be pain-free.” — Terri Johnson

Woman excitedly in front of chalkboard which has a quote bubble drawn with text "If thinking positive thoughts would make it go away, I'd already be pain-free."

22. “I can’t always keep up with you or work as fast as I’d like to.” — Rhonda Lynn Walker-Trayers

23. “Just because I did something one day doesn’t mean I can do it the next. I can’t plan my good and bad days. But please don’t stop asking me to be included in things, just understand when I just need to rest and be OK with it.” — Tommy Sorg

24. “Every single day is a battle. We just hide it better on our ‘good’ days.” — Marie Oberempt

25. “I’m not seeking attention, drugs, sympathy or special treatment. All I’m seeking is understanding and acceptance, just like anyone else.” — Faith Merryn

What would you add to this list? Share with us in the comment section below.

Editor’s note: Some answers have been shortened for brevity/clarity. These answers are also based on personal experience and shouldn’t be taken as professional advice. Talk to your doctor before starting on any medication.


Dear Car Wreck,

It seems like yesterday that I woke up in the emergency room completely unaware of what the previous days and hours had been. I never thought something like you would happen to someone like me.

The really good thing about you, the only good thing about you, is that I don’t remember you at all.

I don’t remember the screaming, the initial pain, the windshield as it cut my face open and left me in a pool of blood, the “friend” yelling for me to be quiet as I lay there with my legs barely hanging on, the sound of the jaws of life as they cut me out of this terrible mess you had me in. I don’t remember the impact as the other car hit us at a speed of 55 miles per hour. I don’t remember any of it, and I’m so glad that part of you is not etched in my mind.

You see, you are now part of the past, but the pain from you still lingers.

As I awoke in the hospital, I really had no clue about you and the way you crushed both of my femurs between the dashboard and the seat of the car. I had no idea I would have a collapsed lung, broken ribs and be forever changed.

You changed me forever. The first glimpse of what I would live with for the rest of my life from you showed its ugly head in the hospital. You see, I was in terrible pain from you. Because of you, I will forever have titanium rods in both my femurs and many scars. Scars that tell the tell of a tragic time that, as the doctors say, will forever be part of me.

As the nurse came in to do the first round of physical therapy, I felt this pain. This pain that would linger. It was all I could do not to hit this lady trying to help me as I healed from you. Slowly healed from you. This was the beginning of a journey you began at the young age of 14 in my life.

I don’t remember you, but you will never be forgotten.

As my stay in the hospital continued, I learned more about you. I also learned more about the people I was with. You see, a friend is one who is there through good and bad, and sadly, these friends weren’t those friends. I did also learn who my true friends were, ones who would come and take me out in my wheelchair. I learned that because of you, I now had someone else’s blood running through my veins because of multiple blood transfusions. Because of you, I would stay in the hospital until this lovely chest tube could be removed.

As my journey to healing continued, I was broken, depressed and had no hope. At the age of 14, because of you, I had to stay home and not return to school. My homeschool teacher tried to keep me on track, but it didn’t work. I missed the whole rest of that year. Because of you, I quickly realized that even after three months in a wheelchair, learning to walk again and months with a walker and crutches, that this pain would never really go away. But I was sure it would! Maybe it was the screws holding my rods in. Maybe taking those out would relieve my pain. Time would tell. And time would tell the worst. My pain from you wasn’t going away. And no one knew why.

Now years later at the age of 33, the pain from you is still there. You have certainly taken so much from me. Many times you have taken my joy. Many times you have kept me up at night and there is no consoling me. Many times you just really make life hard and inconvenient. So as I write this letter to you, car wreck, I am really writing to the pain. The pain you caused. Though I don’t remember you, the pain reminds me of you every day.

I would love to hear the doctors say one day that they know the reason why this pain you caused won’t go away. I can hope. I can hope it will get easier to live with chronic pain. And some days it is. Some days I am totally OK. Some days I can have joy in spite of the pain you caused.

May this pain you caused help me to help someone else along the way.


Woman and man sitting together on a hammock outdoors

I hate feeling like a flake. Hate. It.

As I sit here writing this, it is a beautiful Saturday afternoon. The sun is shining, and I am wrapped up in a blanket on my couch watching a movie. To most people, this may sound like a nice, lazy Saturday afternoon. I would even go so far as to guess that most “normal” people may be envious to have a day off like this with no place to go where they can just “Netflix and chill.”

But the thing is, I am not a “normal” person. I live in chronic pain due to lupus and fibromyalgia. At one point in my life, a day like this may have seemed like a heavenly treat, but in the past 15 years since becoming diagnosed, these days have come far more often than I would like. And they are no treat.

The problem is that I was invited to a party today that I have been looking forward to for weeks. At the time, I RSVP-ed I was feeling good and had every intention of going. I was so happy that nothing else was on the family calendar for that day, and I was really looking forward to getting to know some of the people who were attending better.

But then a few days ago, I started what I can only presume is the beginning of a flare. My everyday pain became more intense than the norm, brain fog got a little worse and my tremors became more pronounced. So I can’t say it’s altogether shocking that I’m feeling lousy today. But even after 15 years, I’m still in such denial at times and have the ever-present wish that tomorrow will be better.  And even though I pretty much knew that tomorrow (today) wouldn’t be better due to past experience, I try to not project too far into the future. If I did that, I would never have anything fun in my life planned!

Well, today wasn’t better. In fact it may even be a little worse. So I had to make the decision: do I go or do I send my regrets?

My life, as I know is the case of many other pain warriors’ lives, is a constant list of “pros versus cons” when it comes to decision-making. I feel like with even the smallest of decisions, I’m always teetering on the fine line between pushing myself and exercising self-care.

For example: If I attend, will it make my pain worse? If it does make it worse, will the benefits of attending and socializing with my friends outweigh the effects of the worsened pain? Or if I don’t attend, will it make me resentful that I couldn’t go? And if so, will the resentments develop into emotional pain for me, which may cause me more physical pain?

And that’s pretty much what goes on in my headspace during times like this.  “Mental gymnastics” is what a friend in my local pain group calls it, and I can’t think of a more appropriate term for it. Swinging back and forth, back and forth.

So my ultimate decision today was that I shouldn’t go. That I should stay home and rest and hope today’s resting may equal tomorrow’s lower pain day. I won’t lie, I’m pissed off and a tad resentful that I have to make decisions like this. But no matter how angry I get, it’s not going to change my situation. So I just have to go with my gut instinct, trust it’s the right decision for me and hope I will be invited again next time when, hopefully, I can attend.

Group of woman outdoors

The Mighty is asking the following: What’s one of the hardest things you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

Dear Jessica,

I know right now you are in complete and total shock and truly do not believe you can go on. You fell off your bicycle (that amazing pink cruiser you got right before seventh grade) and ended up having brain surgery that would alter your life forever.

Cognitively you are fine, but you gave everyone quite a scare. You fell off your bike into a stone wall, and being the stubborn Jessica you are, walked home from the accident despite the many cars that pulled over to help you. You had no idea your brain was bleeding from within. You only knew you had broken some bones because you were unable to move your right arm. Your head was pounding and you were dizzy, but even before the diagnosis that would change you forever, you only said, “I’m fine” to anyone who pulled over to help you.

Once you arrived home, Dad took you to the hospital, where they also thought you just broke some bones and had some bruises. After strapping your arm up in a sling due to a broken collarbone, the doctors released you. Halfway out the hospital doors, you began to throw up, which you would later find out was a sign of a head injury. The doctor decided to give you a cat scan, just in case. You must have had an angel even back then because, had you not thrown up before leaving those hospital doors, I’m not sure I would be here writing you this letter.

Fifteen minutes later, you were in an ambulance headed to the best trauma unit in our area to have immediate brain surgery. You awoke in the ICU the following day with half a shaved head, a feeding tube, catheter and a ton of confusion. Dad was right next to you and explained everything that had transpired just 24 hours prior. I wish this was the most difficult part of my letter to you, but sadly it is not.

Afterward, it was a rough year to say the least, but you were alive and beat the odds of a tragedy no one saw coming. You got a ton of attention and people were so happy you were OK, and there were no serious effects from surgery. You were still the smart, funny, happy Jessica who would look just as she did once all the hair grew back and the outside scars healed. This is the part of the letter I have dreaded writing, but I promise your story has a happy “ending,” so bear with me.

Although the scars heal, you end up being diagnosed with something called chronic pain: an invisible illness you spend the next 10 years trying to cure. The next 10 years will be the scariest, most painful years of your lifetime, but I promise these years will make you the strongest person I have yet to meet. You have many surgeries during these years to try to take the physical pain away, which I can tell you now only end up making the pain worse, but how could you know? You are prescribed every medication known to man and endure every side effect possible.  You spend most of your time either in doctor’s offices, school or with friends trying to numb the pain. You gain weight because as the years progress, your hopes for any cure or relief to this physical pain will disappear. You declare medical bankruptcy because of all the medical bills that pile up over the weeks, months and years and end up coming to a point of self-destruction. You drop everything in your life, including college and your dreams of motherhood, a family and your hopes of being a teacher/writer. The idea of living in physical pain for the rest of your life becomes too much to bear, and you hit rock bottom. You spend your nights crying and partying. This cycle of destruction continues for a little over a year until a person who cares for you takes you to the Mayo Clinic, and against your will you enter a program where you learn to live with chronic pain naturally and accept this diagnosis: a diagnosis that came way too close to being your death sentence. Chronic pain came closer to killing you than brain surgery.

My heart breaks for you. You endured so much pain, both physical and emotional, for over a third of your lifetime, and I left you. I gave up on us, and I am sorry for that. However, I picked you back up, and you worked your ass off to accept chronic pain and learn to live with it without it affecting your happiness or stealing your dreams.

I want to write that I found a cure for you and you never had to deal with chronic pain again for the rest of your life, but I cannot do that for you. I never found a cure to chronic pain. However, I did find you/us health and happiness despite chronic pain. You get your degree in social work, and you love to exercise and practice mindfulness/meditation and yoga. You become a mom, a great mom at that. You are now 34 — that must sound ancient to you, huh?  The good news is, your 30s are far better than your 20s, and chronic pain no longer rules your life. You have some difficult moments, but you are not only surviving — you are living. You are making your dreams come true: motherhood, family and health, and best of all, you are helping those with chronic pain who feel as you do now: hopeless and depressed.  I’m sorry for the destruction I caused you for those 10 years once you found out you had chronic pain, but you will learn how to help yourself. Chronic pain will most likely be a part of your life forever, but you do not have much time to focus on that. You have much bigger and better things to do.

I love you, Jessica. I did not love you for a long time. I hated our diagnosis and I hated my actions, but I love you now, and I promise things will get so much better. Chronic pain will make you the strongest, most empathetic, grateful person I know.

Love always,

The Future Jessica

Side-by-side photos of Jessica

Follow this journey on No One Gets Flowers for Chronic Pain.

If you or someone you know needs help, please visit the National Suicide Prevention Lifeline. You can also reach the Crisis Text Line by texting “START” to 741-741. Head here for a list of crisis centers around the world.

The Crisis Text Line is looking for volunteers! If you’re interesting in becoming a Crisis Counselor, you can learn more information here.

While experiencing physical pain from time to time is part of life, chronic pain is something entirely different. With chronic pain, pain signals keep firing in the nervous system for weeks, months, even years, instead of stopping eventually like with acute pain, according to the National Institute of Neurological Disorders and Stroke. Because a large misunderstanding of the disorder still exists, people with chronic pain often get dismissed as “dramatic” or “lazy,” when this couldn’t be further from the truth.

To better understand this chronic disorder, The Mighty asked people with chronic pain to describe what it’s like to live with it.

This is what they had to say:

1. “[It’s] like having mono and the flu combined. Your body feels like concrete — heavy and impossible to move. You know the type of flu… where the sheets hurt your toenails and your pillow feels like rocks under your throbbing head? The kind when you can’t stop writhing in pain because it hurts so bad, but it also hurts to move? Like that. On a regular basis. No joke.” — Tracy Boyarsky Smith

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2. “I wake up feeling like I’ve been in a cage fight and have fire ants arguing over nonsense in my joints. Every movement is heavy and protested. Despite the pain I look fine and happy on the outside, but I’m counting down the minutes till I can go home and crawl into bed and just not have to pretend anymore.” — Molly Kelsey

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3. “My pain has been mainly neurological. I describe it as like shaking a bottle of fizzy water and keeping the cap on. The busy pressure is often what my mind is like.” — Ric Salinger

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4. “I don’t know what it’s like not to be in pain, to have a refreshing, unbroken sleep, to do things without causing pain somewhere. On a bad day, I can’t do my hair because it hurts too much.” — Mirella Joy

5. “[It’s like] walking painfully through a jungle, completely engulfed in a thick, disorienting fog, and you feel you need to sit down and rest, and your body won’t let you, but nor will it let you continue.” — Laura Vago

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6. “On a good day I wake up with the pain most people would stay home from work or school for; on bad days I live in a bathtub to relieve the intense pain and spasms; on the worst days I’m in the hospital on IV fluids and pain meds. It’s amazing how well one can fake feeling OK on our so called good days.” — Gretchen Lightcap McLachlan

7. “On my best days, it’s an unyielding static of discomfort. Your week’s allotment of energy can be used up in a single morning so you’re sure to make every moment count. When a flare hits, every joint aches and vibrates incessantly. You feel like you have been encased in quicksand, and the fatigue hits you like a strong sedative.” — Lisa Dickinson Gastaldo

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8. “Imagine someone with a rubber mallet keeps dropping it on your bare foot repeatedly, over and over, for an hour. Now imagine that in every joint. That is what my pain is like, often on a daily basis, for most if not all of the day.” — Julie Pruitt

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9. “It’s the nagging person in your life who never goes away no matter how much you tell him to or try to ignore her.” — Alison Taylor

10. “It’s like having a small child constantly tugging at your sleeve, desperate for your attention, and you do all you can to keep him happy and stop him from having a toddler tantrum. Sometimes, however, you can no longer reason with him and he has a full blown tantrum and you just have to leave him to get it out of his system.” — Winifred Kakouris

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11. “I’m 37 years old and at a healthy weight, and my body feels like I’m 90 years old. It hurts to move, washing my hair hurts… it’s a good day if I can lift my arms.” — Melissa Cote

12. “It’s like watching a Christmas tree with the twinkly little lights going off and on, with the twinkly lights being the aches and pains you feel in your muscles.” — Lakshmi Rajagopalan

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For as long as I’ve been living the spoonie life (16 years), I’ve had these weird little bouts of fogginess. The combination of chronic pain, fatigue and lack of sleep take a huge toll on the brain, and sometimes it’s really difficult to say words, let alone form sentences.

When it comes to brain fog, I’m particularly bad at remembering words and/or using the correct word. This used to annoy me so much when I was at University as I studied English at Masters level. I sometimes simply couldn’t muster up the most obvious word and would end up really frustrated and paranoid about what my classmates thought. It still infuriates me to this day, but luckily if my boyfriend (BF) is around, he can finish my sentences for me. Unless I attempt to battle through the fog and make up a word, then he just laughs.

I also suffer with short-term memory loss, poor concentration and general haziness. It’s not the best; it makes me really angry, but it can also be pretty hilarious.

I’ve been compiling a list of the ridiculous things (when I remember to write them down) I’ve said due to brain fog, and I thought I’d share them so we can all have a little giggle.

1. “Shut the window doors.”

I wanted the curtains closed. The curtains will forever be the “window doors” to us.

2. “Where’s the iPad?”

I was using it. I do this a lot, with everything.

3. Me: “Can you pass me that thing. That big iPad.” BF: “You mean the laptop?”

4. “I like diamonds, not those scuba sercomia.”

I meant cubic zirconia.

5. “There’s a gap in the wordos.”

The curtains weren’t closed properly.

6. Me: “I’ve got them sneezing meds in my bag.” Friend: “Antihistamines.”

7. Me: “A lot narrower than his fed, fred, forehead.”

8. Me: “Could you pass me the hook, please? The telly hook.” BF: “The HMDI cable.” Me: “Same thing.”

9. Me: “I’m taking one of these. I have to let it melt on my face.” BF: “You mean ‘on your tongue.'” Me: “My tongue is on my face.” BF: “In it, but OK.”

10. “His hair is skwed” — hysterical laughter — “I meant his head is square.”

11. Me: “Why didn’t you have a beer in the hospital?” BF: “You mean the restaurant?”

12. Me: “I’m just lulling you into a false salsa security.”

13. “Little gem lep-see.”

I meant “little gem lettuce leaves.”

14. Me: “You can’t reheat chucking chocolate.” BF: “‘Cooking’ chocolate.”

15. “He’s put it in a tub of cot water.”

Hot water, I should have said “hot water.” Oops.

16. “I’ll only eat ice cream with a fork. I mean a knife. Oh for f*ck’s sake, the other one.”

The amount I talk about spoons, and I couldn’t find the bloody word.

17. Me: “I can’t help it if my face doesn’t speak properly.” BF: *Looks at me.* Me: “My mouth then.”

I hope you had a little chuckle at some of my brain fog moments. I’m sure there’ll be more to come.

Follow this journey at Sarah in Wonderland.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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