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25 Things People Living With Chronic Pain Wish Others Understood

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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.

Originally published: February 16, 2016
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