Loved ones don’t always know exactly what to say after they’ve found out you’re living with chronic pain. In an attempt to be supportive they might tell you that you look great, not realizing it can make you feel brushed off, or offer some treatment advice that actually wouldn’t help. Whether they’re trying to be helpful, empathetic or even dismissive, their words can have a powerful impact.
We partnered with the U.S. Pain Foundation to ask our community with chronic pain what they wish people would stop saying, and what they could say instead to truly make a loved one feel heard and respected. If you know someone with chronic pain, consider this a guide for being an ally.
Here’s what the community told us:
1. “Stop suggesting treatments/cure-alls/etc. I need loving support. Instead of saying, ‘Have you tried yoga/eliminating gluten/etc.?’ recognize that we work with experts and know our bodies and our illnesses. Ask us instead if we need some help — ask if you can go snag groceries for us next time you’re out or randomly call us or whatnot. If you want to support us, give us real support.”
2. “People say, ‘Wait until you’re my age.’ They should be saying, ‘I’m sorry you already feel like you’re my age.’ I’m 21 and my nerve endings are gone, I have no reflexes anymore and I’m so sick of people telling me I’m too young to be ill. Chronic illnesses don’t discriminate by anything, especially age.”
3. “‘Join the club.’ People don’t realize that chronic pain is a little different, and our tolerance builds up. I’ve pushed through days where my back brought tears to my eyes and most would have been in the ER. Maybe [instead] just, ‘I’ve had pain before, so I can empathize. Let me know if there’s anything I can do to help.’”
4. “When they say, ‘You must not be in that much pain if you’re going out today!’ they should say, ‘I’m glad to see you were feeling well enough to be able to go out today.’”
5. “‘You poor thing.’ Maybe instead say, ‘Wow, you are so strong for having to go through all of that.’ I’m not a weak ‘poor thing.’ I’m strong.”
6. “‘I wish I could help.’ Maybe you do. But it is such an empty statement. Instead maybe say, ‘I’m so sorry you are going through this.’”
7. “‘At least you don’t have/feel *something worse than you have or feel.*’ I know they mean well… And it’s occasionally helpful to remember that you could have it worse. But mostly I just need to hear, ‘I’m sorry you’re feeling that way’ or ‘It must be really hard/painful, I’m sorry.’”
8. “‘Get well soon.’ They don’t understand we don’t get well. We might feel better some days, but the pain is always there. I know they mean well. Instead I would like them to say, ‘I’m sorry that you are not feeling well, hope the pain calms down soon.’”
9. “Stop saying, ‘I understand.’ Nope, you don’t, unless you yourself are going through it. Even then, everyone’s pain is different. Or, ‘My mom/friend had back surgery and now she’s fine. Can’t you just have surgery?’ I wish they would say, ‘I’m sorry you are hurting.’ Or, ‘I’m going to drop off dinner at your door. No need to answer, just enjoy.’ I’ve had friends do this before and it meant so much. It was so supportive to understand I didn’t feel like cooking but I also just wasn’t up for visiting.”
10. “‘Just power through it!’ The intention is always good, but it’s never helpful. It makes me feel even more isolated because anyone who truly knew the strength it takes to live with chronic pain would realize how silly that sounds. Instead, I wish they’d say, ‘I can’t imagine how hard and exhausting this must be for you. Let me know how I can best support you.’”
11. “The word ‘again.’ ‘Oh you have to cancel, again?’ ‘Oh, you were in the hospital, again?’ ‘Oh, you’re in pain, again?’ It’s not that things are happening ‘again,’ it’s that because it’s chronic it’s still happening. I wish they would say ‘I’m sorry you’re still in pain.’ It makes me feel that my illness is putting them out. I don’t ever mean to hurt people because of my illness, but yes I do have to cancel plans, and when my pain gets unbearable I’ve had to go to the hospital. I’ve just come to hate that word.”
12. “Please don’t say, ‘Oh my god! You look so skinny, that’s fantastic!’ My boss said that to me when I had pancreatitis. I was on full stomach rest unable to eat for three days and pulling all-day shifts. Just don’t say anything about weight or looks. If someone genuinely looks tired, ask if you can help them with anything.”
13. “‘You seem a lot better!’ I seem better because life demands that I participate even though I am always painful. I would rather hear, ‘It’s amazing you can put on that smile every day even though I know you don’t always want to.’ This acknowledges both the ongoing struggle and the strength we sometimes forget we, as pain patients must conjure just to face the world.”
14. “I’ve heard, ‘Oh, what’s wrong with her today?’ spoken to another person in the same room as me after I was trying to explain how I felt one day. I’ve pulled away from these people. It’s exhausting to have to constantly explain how I feel. Once, just once, I wish those people would ask about my condition or take the initiative to do some research on chronic pain. It hurts when you’re mocked and not understood.”
15. “‘You are always smiling so you can’t be in that much pain!’ Ugh! Yes I smile. Do you really want to hear how badly I hurt? And maybe my smile will make a big difference in your day.”
16. “‘It could always be worse.’ Yes. I am aware of that. I am truly grateful that it’s not ‘worse.’ But telling me it could be, doesn’t make it better.”
17. “I wish people would keep their home remedies to themselves unless asked. I love my family and friends but there is no amount of positive thinking or new fad diet or secret fruit from a TV doctor that’s going to stop my multiple sclerosis flares or leukemia. Just tell me you love me and support my decisions with my doctor. It’s my body, my pain, my life. I know what’s best for me.”
18. “‘You need to get off those meds, they are bad for you!’ I would much rather them say, ‘I hope those meds offer you some relief.’”
19. “I hate hearing, ‘I couldn’t live like you.’ I’m on HPN (home IV nutrition) and in chronic pain. The implication of ‘your life sucks’ is the right thing to say? Perhaps start with, ‘Is there anything I can do for you?’ Try empathy when I’m down and out and remember I’m more than an illness. Lastly, I love to laugh. Tell me a story, something funny at work and don’t be afraid to mention my illness. It’s just a part of my life.”
