couple talking with text 19 things people with chronic pain wish others would stop sayign

19 Things People With Chronic Pain Wish Others Would Stop Saying

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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.”

What do you wish people would stop saying, and what should they say instead? Share in the comments.

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7 Things People Need to Understand About Chronic Pain

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I wish I could make everyone read up on invisible illnesses. It breaks my heart whenever I see people being emotionally abused on social media for parking in a disabled space, using a wheelchair although they can technically walk or sitting on public transport and not giving up their seat.

These people didn’t ask to be ill, and they didn’t ask for invisible symptoms so people wouldn’t believe they’re hurting or need help.

This is what I want people to understand about my condition, Ehlers-Danlos syndrome, and the chronic pain associated with it:

1. Understand we can be “OK” one day and unable to move the next.

I’ve lost people in my life who couldn’t believe that I can spend a day shopping one day and then I can’t get out the bath the next.

2. Understand we know we don’t look sick all the time.

We know we may look fine, but it’s called an invisible illness for a reason! Sometimes I cry myself to sleep wishing I looked how I felt so people would leave me alone and stop asking so much from me. Instead of telling us we look well, please ask us how we are inside — it will mean a lot.

3. Understand you don’t need to tell us that someone has it worse.

You might think this is a useful thing to say, but we already know some people have it worse. Chances are, whoever you told this to has thought about it a million times before. And knowing someone may be worse off doesn’t cure the pain.

4. Understand that we realize we’re too young for this.

Telling us we are acting like an older person or saying we should be living life more unfortunately doesn’t help. It’s upsetting and reminds us what our lives could be like if we weren’t ill. I know I’m too young for a limp and dropping cups of tea that are too heavy for me. It’s not something you need to point out.

5. Understand we may have mood swings.

This is a big one! A lot of people tell me I have crazy mood swings. I’ll call someone to stop by for giggles, girly movies and wine, but when they come round, I’m sobbing. I can also be emotionless, sit and stare for hours and barely interact. It’s really hard to be in pain, and it does take a toll on you emotionally.

6. Understand we don’t need you to offer us cures and “fixes.”

See my previous post! I’ve been offered so many suggestions on how to “fix” me. I have an incurable condition so unfortunately suggestions like exercise will not fix me.

7. Understand we don’t want to ask for help all the time.

Sometimes I’ll feel fine, and sometimes I won’t (see point #1). If I ask for help carrying my bag or ask to lean on you while walking, please know I don’t want to have to ask. It’s upsetting enough to be dependent on others without being questioned. “You carried your own bag yesterday” or “You walked in heels last week, so how can you not walk in trainers today.” I do rely on people for help and support, and there is a lot of guilt associated with that.

Think before you speak to someone with chronic pain. There is so much we’re holding in — dealing with a life in pain and not knowing how we will feel from moment to moment. What you feel may be a throwaway comment could be the last straw to someone barely holding themselves together. 

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I Inherited My Parents’ Chronic Pain, but I Also Inherited Their Resilience

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I grew up in a loving home, one in which I always felt valued and cherished. I also grew up in a home where heating pads were often seen held on aching joints and medicine bottles lined the countertops in the kitchen. 

Both of my parents have chronic pain and have had it for years. At a young age, I became familiar with things a child doesn’t typically understand: Don’t bother Mommy when her neck is hurting. Go easy on Daddy when he can’t go outside and play with you. Even before I ever experienced it, chronic pain was a big part of my life. For the most part, it defined my childhood.

The general rules of genetics state that if your parents and/or grandparents have a certain condition, you are more genetically predisposed to developing it as well. As for me, my family tree is full of arthritis and other chronic pain conditions. So it wasn’t really a surprise when I started developing chronic back pain at 17. I had to come to terms with the fact that I had inherited chronic pain from my parents, and that was just how it was going to be.

At first I was somewhat bitter and frustrated that out of all of the things I could get from my parents, this had to be it. But I also realized something else through this. Not only did I inherit my parents’ pain, but I also inherited their resilience. They are two of the strongest people I know, and I would like to believe I’ve inherited even half of their strength. I also think I’ve inherited their courage and determination. If I got the motivation to push through the pain from anyone, it would have to be them. As much as I hurt, I remember they’re going through the same thing, and knowing that we’re all in it together gives me strength to carry on. 

Yes, I inherited chronic pain from my parents, and sometimes I feel wronged by the unfair deck of cards that has been dealt to me by my genetics, but I’m thankful I am who I am. More than that, I’m thankful my parents are who they are, and I get the chance to carry on their strength and determination in the midst of pain. Maybe, when I look at it, my genetics aren’t so bad after all.

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The Harsh Questions Chronic Pain Forces You to Ask

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Pain is a part of you. A part of your life. It may linger some days only to come back around and rear its ugly head because it will always be a part of you.

Pain is intangible yet so impressionable on us. Pain can make us hide out in bed for days, change careers, get divorced. It can even force us to change as a person.

Question is: How will you let pain change you? Will you be angry at your situation and everything you had to give up? Will you become bitter towards those who can’t possibly understand? Or will you look at every day as a gift and be thankful for the person you have become because of your trials? Will you focus on healing more than your misfortunes? Will you still be kind and compassionate towards those who could not do the same for you during your hardest times?

To those of you who do not struggle with pain, envision this: You wake up with pain, you shower with pain, you work with pain, you lay down with pain. The pain is so widespread that if you tried to ice it then you might as well be bathing in ice cubes. Pain you can’t shake off. Pain you can’t ask to leave and come back when you’re done living your life or when that special occasion is over. Pain so intense that sometimes you contemplate if life is even worth it. Pain that engulfs your mind, body, and soul, then leaves you crawling and scratching your way out of the shadows and back to reality.

The life you once had complete control over now has control over you. This pain controls you like the diabolical tyrant it is. It tells you when you can shower, work, eat, and sleep. It forces you to push yourself beyond your limits, then punishes you days or even weeks after.

Hard to imagine? What if I told you that not only do you have to live with excruciating pain but you have to be judged, ridiculed and neglected by society, your friends and maybe even your family too. This is the harsh reality for many people living with chronic pain or invisible illnesses, including me.

To those of you healthy and pain-free: What are you losing by asking a simple question like “How are you?” Or “What’s your pain level today?” Or even “Do you need anything?” We, the sick, don’t need pity. We need love and understanding. The best way to show love is to show compassion.

To those of you who are sick and/or living with pain: If you had the choice to let your pain rule you and your life or to deal with your pain as best you can and decide what life you want… what would you choose? It’s a daily struggle to cope with chronic pain and illness, but if you choose to do your best every single day, that in itself is a victory.

If you or someone you know needs help, visit our suicide prevention resources page.
If you need support right now, call the Suicide Prevention Lifeline at 1-800-273-8255

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Thinkstock photo by Todd Warnock

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The Gray Area of Chronic Pain

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I often feel that my chronic pain isn’t “bad enough” to talk about. Truthfully, I sometimes even question my right to say “I’m in pain.” Yes, many others have different and even worse pain than I, but that does not negate my experiences. Comparing my pain to that of others is of no benefit to me. We all experience our own pain, and it impacts our lives differently.

I have chronic pain and will likely deal with it for the rest of my life. Unfortunately, since I exist in the middle of the pain scale most days, I feel unworthy to speak about my pain. When did I let myself start believing my pain wasn’t “bad enough” to be treated… to be noticed… to matter? Don’t get me wrong, I am grateful my pain levels
aren’t higher. I just wish I felt allowed to express my feelings and frustrations about my pain and the limitations it creates. In the end, I guess I am the one holding myself back. I find myself wondering, “Am I am the only one with this struggle?”

I live with chronic back pain. After a series of injuries and surgeries, I have come to accept this pain will be part of my life forever. I am fortunate enough to still be able to function, but the constant struggle that comes with everyday tasks goes unseen. Like many out there, my disability is invisible, and yet I don’t feel “disabled enough” either.

Maybe there are lots of us who feel lost in the in-between: too well to be disabled yet too disabled to be well.  I am a chronic pain warrior, but I don’t feel my lower levels of pain qualify me as such. I am disabled, but I can still do many things, just with difficulty. I often find myself wondering, “Where do I fit in?” “Where do I belong?”

I fit in right here. I belong right here, fighting this fight. Finding others out there who fight this fight with me. Our battle matters. Our enemy is the same. Our struggles may not be exactly the same, but we are here for each other. We do not judge each other. We care about one another.

I have  a friend with complex regional pain syndrome (CRPS). When I visit with her, I sometimes feel ashamed to even mention my pain and disability. She lives with some of the highest pain levels imaginable. I mean, who am I to complain? I need to remind myself that talking about my pain with those who understand is not complaining. Talking about it is discussing a common problem with a supportive friend. We are both chronic pain warriors fighting the same foe. There is no judgment.

Being in constant pain (at any level) wears you down. We must allow ourselves to say “This pain matters.” Being  disabled at any age can be disheartening. We must remember it is OK to feel this way. We are not alone. Others out there feel this way. Surely there are many of us. We can support each other. We can find where we belong. Places like The Mighty are a great place to start.

We all deal with our pain and disability as best we are able. We all fight the fight together, and we all support each other. Just because you don’t feel “bad enough” doesn’t mean your pain and your struggles don’t matter. They do. You have found where you belong. I am here fighting by your side. We just need to be reminded we are not alone sometimes.

We want to hear your story. Become a Mighty contributor here.

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My Top 3 Totally Unorthodox Methods for Managing Chronic Pain

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In the world of autoimmune disease and chronic pain, there are obviously medications galore out there for us to try in an effort to manage the many symptoms we experience on a daily basis. This is especially true when it comes to pain management. What’s not as well known are all the alternative methods of symptom management available to us. And having been sick for going on 21 years now, I have tried most of them and even developed some of my own. The latter are the ones I’d like to share here.

First, if you don’t have chronic pain, you may not realize that pain, especially chronic pain, can alter a person’s temperament. On good days, or even low to moderate pain days, we can be very pleasant. But shoot that pain level up past six or seven and looking at us cross-eyed might get you a front row seat to a volcanic eruption. It takes a lot of effort to mentally manage pain so there’s not much left in the tank to manage life with. And that fact frustrates us to no end. So, I came up with a few unorthodox techniques to help manage that frustration and, in a way, to mentally manage pain as well.

1. The first is based on the common relaxation technique called visualization. You know, you close your eyes and visualize yourself in the most relaxing place on earth. (Most people pick a beach.) That doesn’t do it for me. I mean, sure, I relax, but afterwards the pain is still there. So I actively visualize fighting it. My disease becomes a monster living in my body that I have trapped in a box – not unlike a large treasure chest – with chains wrapped around it and padlocked. When it escapes, I hurt or I flare. So I visualize capturing it and locking it back up. It probably helps that I am a huge nerd – I played Dungeons and Dragons in high school before it was actually cool to do so and can wield a broadsword and dual fencing foils in a dress. (These facts just add to my imaginary adventures.) But seriously, I feel more powerful and active against what is going on inside my body by doing this. And it’s fun! So win-win, right?

2. Next is a technique based on how kids are taught how to manage their frustrations about the way the world works and deal with others (because children are so good at talking stuff out…). And having raised two highly active boys, I was all about reducing the pushing and shoving, especially at the top of the stairs. There’s a common school of thought that recommends teaching them to take out their anger on a pillow. Because pummeling your brother is not acceptable. No really. It just isn’t. Those of us experiencing chronic pain get frustrated and angry too, but that frustration is unfortunately directed at our own bodies. And let’s face it, we’re not going to smack ourselves. So, I have a freaky blue stuffed mouse that I throw around sometimes. Or usually just pelt a pillow with. I know it sounds violent, but the sheer release of energy is actually very cathartic.

voodoo doll made from an Ugly Doll

3. My last unorthodox technique is referenced in the title. Don’t be put off by the idea of it please. Yes, I have created a pain relief voodoo doll. Let me explain: the idea behind real voodoo dolls is both religious and magic in nature. The psychological theory is that they work because people believe they will. The power of the mind is awesome. So why not try to harness it for our body’s own good? A few years back, there was a popular toy out called The Ugly Doll. To me, they looked like what I pictured the actual cells of my disease would look like. So I bought one, and then I got to thinking. I made a bunch of long pins, with my idea being to lessen my pain by “transferring” it to a comparable area on the doll using my mind and the very concrete action of sticking a pin in that area. Sometimes, a concrete action such as this is extremely helpful when the only real answer is mental control. And sometimes, it’s just fun to stick pins in something. (Especially this because it doesn’t resemble any human or animal on the face of the earth at all!) It really is like sticking it to my disease – pun intended!

So here are my top three totally wacky, unorthodox ways of approaching chronic pain management. I also do the normal stuff like heat, cold or compression. I even do mid-level stuff like creating my own rice-filled weighted teddy bears for headaches and carrying palm-sized stuffed toys I call pain squeezies to squeeze when sudden pain pops up. But by and large, I have found attitude helps more than anything else when managing pain. And you gotta admit, these techniques take attitude! And they’re funny. And laughing helps everything, right?

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