If you don’t have chronic pain, it’s pretty hard to really understand what it’s like. Even if you have someone in your life who has chronic pain, you’re only seeing their experience from the outside — and as any pain warrior will tell you, what you see on the outside barely scratches the surface of all the challenges they deal with every day. “The truth is, I’m living a double life,” wrote Joanna Dwyer in her essay To Everyone Who Lives Pain-Free, From a Girl With Chronic Pain.
We wanted to help break down that barrier, that wall that seems to exist between people who have chronic pain and those who don’t. It’s often because of that wall that people with chronic pain have to deal with hurtful assumptions, faded friendships and disappointing medical care. Since people in your life may not even realize what they don’t know about chronic pain, we asked our community to share something they wish people who live pain-free knew. People generally don’t do better unless they knowbetter, so hopefully bringing attention to the important aspects of chronic pain people don’t know about can help increase compassion and understanding.
Here’s what our community told us:
- “We have good days and we have bad days. Just because we are smiling and laughing doesn’t mean that we’re ‘cured.’ No matter what kind of day we’re having we just want people to support us through all the struggles we have to face.” — Lillian E.
- “I would much rather be healthy and working instead of at home and in pain. I barely have a life outside of my chronic illness. It isn’t easy, and it isn’t fun and being put down and misunderstood because of it makes it so much worse.” — Brittany N.
- “Just because some of us are fat doesn’t mean that losing weight is the cure. Many of us who are fat and in chronic pain and on meds are fat because of the meds.” — Leigh V.
- “It’s not ‘something going round.’ It’s not like a bug I can get over. It’s there always. Even if you don’t think I’m in pain, I am. It’s just at a manageable level. I just wish people would realize that it doesn’t go away.” — Malina M.
- “Just because I am working doesn’t mean I am healthy. It means I have no other options.” — Megan E.
- “Good days don’t mean pain-free days. Pain is always there, just some days we are lucky and it’s less than normal.” — Jessica P.
- “It’s emotionally exhausting. I don’t ignore people because I want to, I just don’t have the energy to deal with drama or pretend to feel fine when I’m not.” — Joanne S.
- “It’s not that we don’t want to do the things you are doing. We just… can’t. It will cause us either/or immediate pain or pain the next day that keeps us in bed. We are not lazy. We just… can’t.” — Heather J.
- “Over-the-counter pain meds don’t work for me like they do for you. I wish they took away the pain but they don’t. If I’m lucky they may relieve a headache or bump the pain from an eight to a seven… That’s why I take them still.” — Holly D.
- “It’s not just pain. It’s that the pain makes everything so much harder and takes so much energy that basic simple tasks become trying to jump hurdles while wearing concrete shoes.” — Selena W.
- “Just because I’m young, and look even younger than I am, doesn’t mean I can’t experience the pain and fatigue I have. I’m in my 30s and feel 80 a lot of days. I know people who are 70 or 80 who get around better than I do. Even if it seems like I am not in pain or exhausted, I am. If you pay enough attention you’ll see the signs of it, but they are hard to notice on a ‘good’ day. That’s because I am used to living in constant pain. Your eight on a pain scale would be more like a two or three for me. Now try to imagine what my eight to 10 pain level would be.” — Lisa K.
- “Everything has to be planned. Grocery shopping with no electric wheelchair? Go back home. Lunch at a restaurant? Is the bathroom too far? An event? How many meds do I need to make it through but not get too groggy?” — Jean K.
- “The fatigue is quite often more disabling for me than the pain (even though the pain is horrible). The fatigue is so profound that just getting out of bed to go to the bathroom is exhausting! I always tell people it’s like hanging 50-pound weights on my head and extremities and trying to get through the day.” — Lori A.
- “You never get used to the pain, no matter how long you endure it. It can be as hard to tolerate on the 1,000th day as it was on the first.” — Alisa E.
- “There is a constant pressure to always be upbeat and an ‘inspiration.’ Sometimes there is no lemonade coming from lemons. Being sick and in pain is burden enough without constantly needing to make others feel better by telling them that there’s a bright side to it.” — Laura F.
- “I adapt what I’m doing a million times a day just to maybe prevent a little extra pain. Changes that you wouldn’t even notice, but are constantly taking up space in my brain.” — Rene D.
- “I wish people would stop trying to ‘fix’ me. If all of the doctors can’t help neither can you.” — Jordan C.
- “That it’s chronic. Chronic means constant and longer than three months. It doesn’t stop. When I’m asked if I ‘feel better,’ I almost feel like I’ve been slapped in the face. No, I don’t feel better. I will never feel better because there is no treatment and no cure for what ails me. It’s something I was born with. It’s chronic.” — Mikki I.
- “I wish people were more aware of the side effects of chronic pain. Things like memory loss, decreased energy, anxiety, depression and other health problems are common with people dealing with chronic pain. Also, being afraid to do anything because there are very few things that are worth flare-ups in pain levels.” — Matthew A.
- “When my pain levels are high I’m more sensitive to stimulation. Every noise is too loud, lights too bright, movement around me too distracting. Moods are variable depending on pain levels as well.” — Cheri M.
- “Don’t always look down or baby us. There’s a line between empathy and patronizing.” — Mollie D.
- “Being diagnosed with chronic pain doesn’t make us different when it comes to our friendships. Things may be harder for us in that we are still the same person who enjoys chatting on the phone, or grabbing coffee, or having friends stopping in to say hi, although it may take a bit of planning, but everything in life does and it doesn’t have to be about our pain. We do have other things in our lives, still [have] our children, our significant others, and yet we get treated like we have a contagious plague.” — Lisa Q.
- “Just because I say no a lot of the time doesn’t mean you [should] stop inviting me out.” — Leonie D.
- “I constantly have to plan ahead, every aspect of my day, week, month, in order to function at any level, despite the constant pain.” — Rebecca M.
- “While I never, ever expect special considerations to be made to better accommodate my pain at events or outings, when it does happen it is so amazing. I feel so grateful when friends even just ask if I’m OK to wander the shops if they’re concerned about my pain levels. I don’t want or expect sympathy but a little empathy honestly means the world to me and makes me feel like people genuinely care about me.” — Emily C.