Four things to stop saying to people with chronic pain

As a person who lives with chronic pain, I’m subject to a lot of well-intentioned communication that actually feels really terrible to receive.

“This too shall pass.”

“I read about a treatment that I think could really help you.”

“Your body is asking you for love and care.”

“Let’s stop and do this when you’re feeling better.”

I hear these sorts of things often, and I would very much prefer to never hear any of them ever again. I’ll explain why, but first:

Please be kind

Before we really get into the details here, I want you to know that when we talk about living with chronic pain, we’re treading on some of my most sensitive spots. I know this is the internet and I might be a stranger. Also, I’m a person, and I’m in pain. Please be gentle with me.

It’s really hard to tell well-intentioned people about the impact of their clueless communication on me. Usually what happens when I do is I’m met with some sort of defensive “but that’s not what I meant” that centers intent over impact, or something that validates my suspicion that they’re not able to tolerate the fact that I’m in pain. So, usually I don’t say anything. Usually I instead just gently and invisibly step back from my relationship with the person who’s trying to be helpful in this clueless way. When I don’t do that, when instead I tell you about how your cluelessness is landing for me, it’s because I value our relationship, or you’ve earned my trust, or both.

If we know each other and you recognize yourself here, please know that I’m not writing this just for you. There are dozens of you. Maybe hundreds. I don’t need an individual apology, just learn, and stop, and if ever I let you know when something you say about my pain isn’t landing the way you intended, please know that that’s much more of an indication of trust than it is an indictment of you.

Without further ado, here are four things I’d happily never hear again:

(1) “It’ll get better!”

“Pain is not permanent, only suffering is permanent.”

“This too shall pass.”

“Healing is flowing your way.”

“Feel better!”

I have been in pain every waking moment since December 17, 2004, when I randomly got a headache for no discernible reason that just never went away. I am currently in my mid-thirties with a headache that started when I was twenty, so this has characterized my entire adult life. Sometimes I’m in a lot of pain, sometimes just a little. As the years go by I spend increasingly more time in an amount of pain that makes it impossible for me to function. In the first few months of my headache, in college, I noticed that I was much more irritable than I used to be, quicker to anger and less patient, like most people are when they have a headache. I no longer notice that; I imagine the irritability has, at this point, just become integrated into my personality. I’m not as nice a person as I used to be, and the argument “but really I’m friendlier than this! And more competent than this! Really I’m a superhero of brilliance and productivity and kindness! Really!” might well be true but is no longer relevant in any meaningful way. Me in pain is the only me that there is.

My last fourteen years have been an ongoing rotation of new treatments every few months, most of which have shitty side effects and none of which help. A little more than a year ago I stopped working because I was in too much pain too often and many of the things required to be a normal person functioning in capitalism actively made my pain worse: waking up to an alarm, spending time under fluorescent lights, inhaling the scented products people wear in public, staying awake for eight whole hours in a row, etc. If I avoid most of those things I’m still in pain all the time, but less, and when it’s real bad I can escape into sleep. I need income, though, and I don’t know what’s next for me.

So, when someone says, “this too shall pass” it just doesn’t feel true to me except in the sense that eventually I’ll die. I have no evidence that my pain will ever end. On the contrary, all evidence suggests that it may well continue getting worse and worse for as long as I live. And, as it doesn’t appear to be killing me, that might be a while. I’m still trying new treatments as they come out, but at this point it’s mostly because I don’t want to be blamed for my pain, not because I maintain a delusional hope that maybe even though none of the headache meds helped, and none of the alternative medicines helped, and while I derive lots of benefit from my new meditation practice, it doesn’t actually make my pain any less, this next thing (most recently, a dementia med, next, a new med that worked for a kind of headache I don’t have on a patient population that wouldn’t include me even if I did) will be the one that cures me.

What “it’ll get better” actually communicates to me is that you can’t deal with the fact that I’m in pain. It lands right in my fear that no one would be willing to be in relationship with someone who’s in pain all the time. It feels like you don’t understand my situation, and you’re only willing to engage with me as long as you can relate to my pain as temporary. I don’t feel seen, and I don’t trust you to stick around when you figure out that I’m not likely to get better.

When you say any version of “it’ll get better,” you aren’t acknowledging the reality of my life. It feels like you’re unwilling to be with me in my pain. It feels like you need me to get better for you.

(2) “But have you tried turmeric?”

I don’t understand how it’s possible, but an enormous number of people believe that in less than two minutes of thinking about it, they can come up with a solution to my health problems that me and my doctors haven’t thought of in more than a decade of living with and working on them.

“Have you tried acupuncture?”

“I know an amazing energy healer.”

“Ayurvedic medicine really helped my aunt’s co-worker.”

I have tried acupuncture. I have tried all the headache meds, and many others, like seizure meds that made my hair fall out and threatened to kill me via withdrawal when my backpack got stolen on a vacation a few years ago. I’ve tried botox, and other drugs that got injected into my head and made it go numb and tingly and hurt all day in a whole different way in addition to the way it hurts normally. I’ve run electrical currents through my scalp, painfully, for half an hour every day for weeks. I’ve gone on an elimination diet, checking for every food that might be a headache trigger. I’ve tried special glasses. I’ve been prayed for by folks from more different kinds of spiritual communities than I can name. I downloaded an app that told me to replace the word “pain” with the word “banana” and did that and everything else it suggested. I’ve dug deep into my childhood over years of therapy looking for trauma to heal. I tried weightlifting. I tried moving to a different house, a different coast, a different climate. I tried seeing my chiropractor every few days for months. I tried avoiding men entirely. I tried living outdoors in tropical nature with no access to electricity. I tried going on a meditation retreat. I tried reiki. I tried going to the premier headache center on the west coast. I tried drinking a lot of water. I tried choking down an entire mug of sludge Chinese herb “tea” every day, holding my nose to make it possible. I tried snaking a long plastic tube into and through my nose to the back of my sinuses daily to deposit a topical anesthetic on the base of my trigeminal nerve. And yes, I’ve even tried turmeric. This is far from a comprehensive list of the things I’ve tried.

The list of possibly-helpful things I haven’t yet tried is much shorter: trepanning, childbirth.

If you have an idea for something else I should try, please consult this flowchart before telling me about it.

#noadviceplease

Those of us who live with chronic pain are already doing more about it than you can come up with in a few minutes or even a few months.

(3) “You need more self-care.”

“Your body is asking you for love and care.”

“Your pain is a gift, a wake-up call to love you more than ever before.”

“You are in control, don’t get caught in fear and helplessness.”

I have made my body a priority in my life. I love myself a lot. I’m better at self-care than I’ve ever been, and I’m working to get better at it all the time. I work love and compassion real hard, and I steer away from fear and helplessness in every way I can. These strategies help me survive. They help me want to live. They help me find love and connection. They give my life value. But they don’t make my pain go away.

My pain is not a gift, and the fact that I’m still in pain is not an indication that I need to remember myself, or that I’m not letting myself move through the pain, or that my beliefs don’t serve me, or that I need to love myself more. When I hear these things, they feel like blame. They sound like, “I can’t handle the idea of people being in pain for no good reason or face the vulnerability of living in a fragile human body, so I’m going to believe that your pain is your fault and that I’m not in your situation because I’m making better choices than you. From that belief, I’ll invite you to join me in my enlightened pain-free existence, and then when you can’t I’ll imagine that you’re somehow choosing that and shake my head pityingly, sad that not everyone can love themselves as well as I can.”

I am not choosing to be in pain. Even when I make choices that result in more pain, like choosing to skip my regular afternoon nap to go to a friend’s funeral, I’m not choosing to be in pain. I’m just a person, in pain, making choices about my life. Self-love and self-care are hard for many people, and most of them aren’t in physical pain every moment.

(4) “You’re in pain right now, let’s not do this.”

Some of the hardest well-meaning comments I get are from people who know me well and love me and don’t want to push me into doing something that will hurt me. They see us doing something that they wouldn’t want to do on a day they have a headache, like throw a party, or build something with power tools, or go to an amusement park, or hang out with a group of children, and they say, “It’s ok, we don’t have to do this right now. I know you’re in pain.”

What’s hard here is that my pain calculus is different from theirs. If I’m not willing to do something while I’m in pain, then I don’t get to do it at all. Ever. So, sometimes I choose to do things even though I’m hurting, and sometimes I choose to do things even though I know it will make me hurt more. If waiting until I wasn’t in pain was an option, I’d choose that one, but that choice isn’t available to me. People who don’t live with pain all the time often don’t realize how much of their pain-management strategies are predicated on the idea that they can choose to put stuff off until they feel better. When it isn’t going to get better, the math is different.

So, one thing I need from the people close to me is to trust my math when it comes to managing my pain. I’m the one who knows how much pain I’m in, how the things I do are likely to impact that, and how important they are to me. When I choose to do something despite the pain, I’m not making that choice lightly or out of ignorance. I appreciate invitations from the people closest to me to do the things that they know will help my pain best when they respect whatever choice I make in response to the invitation.

Often, when people find out I’m in pain, or when they understand how much my pain is impacting me in every moment, they stop being willing to engage with me in ways that might increase my pain. So how does that function? It makes it so that in order to get to make my own choices about how to manage my pain, I have to hide it from the people around me. There’s a world of difference between “you’re hurting, let’s not do this” and “I know you’re hurting when you choose to do this.” “You’re hurting, let’s not do this” says that if I’d like to do this, I need to pretend I’m not hurting. “I know you’re hurting when we choose to do this” helps me feel seen, and helps me know that I don’t have to hide my pain in order to be free to make choices about how to manage it.

10 Comments

  1. ‘“It’s ok, we don’t have to do this right now. I know you’re in pain.”

    What’s hard here is that my pain calculus is different from theirs. If I’m not willing to do something while I’m in pain, then I don’t get to do it at all. Ever. ‘
    YES, Yes, yes!!!!
    Chronic pain doesn’t stop. Neither does needing laundry, or a clean bathroom, a food. Life doesn’t stop. There is NO “I’ll do it when I feel better” although admittedly, some days are better than others. Doing things on those rare better days just makes for harder days to come, anyway.
    I know exactly how you feel and short of brain surgery I’ve tried it all. Ever met a toddler with headaches? That was me. Now I’m in my 30a and it’s not just my head, it’s my everything.
    Thank you for writing something that eloquently explains to my friends and family what I never have been able to.

    Like

  2. Thank you for this; it’s useful and I love how deeply you’ve understood people’s reactions to your situation. I wish you brilliant health-care practitioners, discovery of the cause(s), continuing inspirations of things to try, and, ultimately, the resolution of your pain. Anyone who’s not a meanie would want you to get better, but you’re awesome already.

    Like

  3. First off, I’m sorry that life has chosen to deal you this chronic pain that you live with. I too have been dealing with chronic pain for about 3 years now, not in the form of a headache, but in my ankle as a result of a complicated condition 17 years in the making and several failed surgeries. You are the first person I’ve come across who actually gets it. I work with the public and have no way to hide my pain or condition and everyone wants to put in their two cents. Fifteen to twenty people a day, 5 days a week, for 3 years. People I’ve never met before. And because I’m at work I’ve had to smile and try to make light of it, while I’m screaming fur them to leave me alone on the inside. I try to explain to friends and family how this makes me feel and I get, “They’re just trying to help,” or “I’m sure that’s not how they meant it.” I got so frustrated I tried simply saying to people that I don’t like to talk about it and I LITERALLY got laughed at. I realize it was probably a nervous laugh because they didn’t know what else to do, but to be in constant debilitating pain and be laughed at when I say I don’t want to talk about it, is like a knife to the heart.
    So thank you for letting me know that there are people out there who understand, though you pay a very high price for that understanding.

    Liked by 1 person

    1. Suzanne, I’m so sorry that, in addition to hurting all the time, you have to deal with this level of well-intentioned harmful crap all day every day. Without the option to hide what’s happening from the ignorant public, I imagine you’re subject to much more of this than I am. I’m so sorry. I want to magically insert my flowchart between the brains and mouths of all the people you deal with at work to catch their well-intentioned comments before they get to you so you can do your job in relative peace.

      Like

  4. Dear Lieva,
    Your essay is very helpful to me as someone who lives with a person who is in constant pain. I have sometimes questioned him about the choices he makes as far as what and how much he does. I’ve had to learn to be okay with his choices.

    Sometimes he’ll go out with a friend, walking all over the city, going to a museum, then out to dinner, and stay up late talking. I admit that I have felt jealous because he usually won’t do that many things in one day with me because he will have much more pain the day after. When I’ve asked him about it, he explained that he can be more honest with me, and that it’s important to him to keep some social life going with friends. It brings him pleasure. One solution we’ve worked out is that he will pace himself so that he we can do something together that is important to me, like going to a party or a play, or a day trip. I just have to be honest with him, too, and let him know so he can plan for it.
    And yet, I am flexible as even the best plan may have to change and I will go to the event without him, or ask a friend to go with me. I feel sad then that he is suffering, and I appreciate that he gets joy knowing I am doing what I want. We remind ourselves that we want what is best for the other. It’s not easy seeing the person I love be in pain, needing to rest, to see doctors, take medicines…all of it. Sometimes I wish I could share half of the pain for him.
    Thank you so much for sharing your experience, it’s a view I haven’t heard from anyone else.

    Liked by 1 person

    1. Yeah. It’s really hard that the ones we love get the less fun versions of us. I live with a lot of anxiety that being honest about my pain with my closest people will drive them away in exactly the ways you describe, and yet my closest people, perhaps not coincidentally, are people who really value honesty and authenticity and transparency and don’t seem likely to leave me for those reasons.

      I’m so glad this felt helpful to you.

      Liked by 1 person

  5. Although I have had headaches for years I rarely talk about it and only a few close people know. This year I told a few people and I immediately regret it. Your article helped me realize why. Every time I see these people they now have a new solution for me… and I know it is because they care about me however it drives me crazy.. So last week I lied and told them that my headaches were much better…

    Liked by 1 person

  6. I am fairly new to chronic pain. I have been diagnosed with sinus migraines and my triggers seem to be weather changes and stress, but possibly other things. I have had sinus pain for decades, but was always able to control it with OTC drugs. Now those don’t work. The only thing that works is codeine and sumatriptan. After reading these posts,
    I’m grateful something still works. My doctor recently put me on seizure medication. I am still waiting to see if that will work for me long term. Sorry if my post doesn’t exactly fit this forum as most people are considerate of my condition and try to help, but don’t annoy me. I guess I am a little scared of having to live with chronic pain if a remedy is not found for me. I feel bad taking prescription painkillers more often than I used to, but otherwise it’s difficult to function at work on a computer all day.

    Liked by 1 person

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