I have the same issue with parents. They seem to believe that I'm just one more supplement or treatment from being well. Though when I decided to take time away from to work on my mental health is was all "what is that going to do?" I stopped looking for their approval long ago but it is still frustrating in a world where more support is what would actually help.
If only others could find the same acceptance that we have that not everything is going to get better. In my work with chronically ill clients, often the most supportive thing I can do is to simply acknowledge their reality, and not offer suggestions for how to fix it or pretend it's going to get better.
I restarted therapy recently and interviewed the practitioners briefly before starting sessions. My most important question was 'are you comfortable treating me without CBT given my multiple chronic illnesses that will never resolve?' Only one says yes!
🤦🏼♀️ It's not a cognitive distortion to know your illnesses are not going to get better. In fact, it's a cognitive distortion to insist that they will! You might have better luck with therapists who advertise themselves as practicing psychodynamic therapy. I also like DBT because it's basically Zen Buddhism operationalized for a clinical setting. Radical Acceptance is a foundational skill in DBT.
Beautiful, thought provoking essay. People don’t recognize the hard work we do must do to figure out how to accept our illness. When I finished your essay it made me think that maybe the next work I need to do (not today:) is to figure out how to accept the extremely annoying comments from others.
I was doing the math and realized that if my MIL has asked me that question at least once a quarter for four years, we've had some version of that conversation at least 16 times. This gave me more compassion for myself for being annoyed with her. If only she would take the hint and stop asking!
My mother in particular is furious every time I refer to myself as chronically disabled. No! That's for old people!
Her attitude led to these chronic illnesses being much worse until I moved out and had my own insurance. I'll never get 'better' as they don't go away, but I do know how to avoid flares and recover faster now that I ever did.
I see this over and over again where denial just leads to more suffering in the form of delayed treatment. My MIL is the poster child for toxic positivity and is so committed to the belief that everything will be fine if she just stays positive. The amount of energy she expends frantically trying to stay positive could power a small city. 🫠
I’ve been in pain since 2000. When my mom was still alive, just like your in laws, refused to accept that I wasn’t magically getting better. It wasn’t until her final years (after 23 years of asking when I would be better) when she had her own chronic pain that she got it.
Much like you I grieve the things I lost, I really miss motorcycling and riding a bike. But my hips, and thoracic outlet syndrome say no. I also have psoriatic arthritis and weird shaped feet, so a manufacturer discontinuing the shoes that work for me brings me to tears.
I feel you on the shoes. My shoe options are so limited now. Thankfully we live in Seattle, which is a very casual place, because I can't tolerate stiff formal shoes anymore. 🫤
I’m so glad you’re writing about this. The comparison with how you acknowledge your dog’s pain more readily than your own due to conditioning is profound. I’m curious if you’ve ever read The Lady’s Handbook for her Mysterious Illness. I’m so curious what you would say about it. I’m also curious to hear more about your thoughts on anti-inflammatory diets.
I haven't read The Lady's Handbook! I will check it out!
I went down the anti-inflammatory diet rabbit hole when I was first diagnosed with arthritis thinking maybe I could avoid the biologic drugs that are the first line of treatment. It made absolutely no measurable difference for my symptoms. As my doctor later said to me, once inflammation reaches the stage of causing chronic illness and joint damage, an anti-inflammatory diet is not going to move the needle. The bulk of my diet is still low-inflammatory food because, you know, why not, but I no longer think that I might cure myself by strictly abstaining from fried or processed foods or eating only organic produce.
Thank you so much for writing this. I injured myself a month ago and have lately been feeling so psychologically low because walking hurts so much. I hate how much brain space and planning is now devoted to pain and limits. It's given me a lot of empathy for what so many people are living with while going about all the business of life, all the time.
I'm so sorry to hear that you're hurt! Hopefully your injury is temporary and really will get better, unlike mine. I kind of wish that everyone had to spend at least one week of their life trying to navigate the world while using a knee scooter because it becomes apparent very quickly how inaccessible spaces are. Especially old European cities--forget it! I want to visit Edinburgh but am not sure I can handle all the stairs. Even visiting NYC last fall was pushing it.
The way that Luna's experience put how your process yours into context is such a valuable takeaway--one that I'll be carrying with me and turning over in my mind for quite some time and I navigate daily chronic pain.
Thank you for that article. It made me understand people with chronic pain better. It showed me also how grateful I am for not being in pain almost all of the time. I hope scientific progress will be on your side.
Thank you for writing! It is endlessly fascinating to me, the compulsion to believe that people must get better, or the compulsion to find a reason to blame ill folks for their suffering. It's preferring hypothetical situations to reality. And when people insist on toxic positivity or moralizing an illness, they prioritize their own *psychological comfort* over responding to the real *physical discomfort* of the person in front of them.
(Because I write about gender-based violence, I will also add that I see a parallel in the behavior of people who choose not to believe women's stories of sexual assault. They are also choosing their own psychological safety over the real psychological, emotional, and possible physical pain of the survivor.)
Yes, you nailed it, 100%. It's all about creating a false sense of security for the person who is well. My MIL is turning 78 this week and has enjoyed remarkably good health her whole life, which she always likes to mention. Most people have enough experience with pain by their 70s that they've been humbled and have more compassion, but she just natters on about how she never gets sick for more than three days and feels just great all the time! "It's because I stay so busy and keep a positive attitude!" 🙄 The smug self-congratulation adds insult to injury.
Pain is a constant, although I find it with my fibromyalgia pain not focusing on it or cataloging it keeps it out of my attention at least some of the time. When I have other types of pain, such as a recent bout of costachondriasis, trying to concentrate on other things makes the pain worse. I tried to listen to my body, and fortunately I have reasonable support most of the time. I think my mother-in-law first thought I was overstating my fatigue and struggles with energy, but as she got to know me well she started to be able to tell when I was flagging and doesn't push me so much anymore. My husband is very accepting and never doubts what I tell him about my pain or energy levels, though he does wish we could be out and about together more.
Yes, I could write a whole other essay about how people with chronic pain learn to tune it out. My clients with chronic pain and I sometimes chuckle about how if we body-swapped with a healthy person and they were suddenly subjected to our daily baseline of pain, they would be writhing, but when you live with it all the time, you just get on with it and go about your day. I have a hard time filling out self-report measures for doctors for this reason and find that I under-report pain compared to healthy people. Do they mean on MY 1 - 10 pain scale, or an average person's pain scale? Because I'm living at an average person's 4 all the time.
Let me tell you about why I trust the physical therapist/personal trainer that I work with at my chiropractor’s office (and this is in no way an implication to go there or anything like that). I asked him once how do I know when the muscle soreness I experience from working out is too much and will there ever be a point when I don’t feel pain? I have suffered lower back pain for most of my now 50 year old adult life and only started truly getting better in the last 3 years since seeing him and my chiropractor. He answered very honestly that i will always have pain. He said something to the effect of “pain is just the body’s way of communicating with us. It’s how we react to it is what is important and that looks different for everyone”.
I think about that all the time and it gives me hope.
I don’t have an autoimmune disorder and I don’t have any major injuries to contend with. My existence with pain is completely benign compared to yours or anyone who is dealing with serious issues. But the acceptance of pain is a reality. And sometimes I whine (at least to myself) like Luna. And I struggle to let it tell me to sit, rest, be in this stupid painful moment. In some ways, it feels more real than the depression that sneaks in.
I don’t ever expect this American society to believe that any pain is real. If you’re not wearing a cast from a broken arm, people think it’s fake all while experiencing their own acute pain. It’s maddening and disappointing. But that’s a whole other story.
This article is so timely for me. I have had severe lower back pain for 25 years and had made my peace with it. But I have recently discovered Pain Reprocessing Therapy and am giving it a go. It's too early to say if it will help, but honestly it's super sensible. I'm concerned though that it's changing my acceptance of my pain. It's probably still worth trying though on balance!
Much in this resonates with me. After a sudden illness, as they say, a couple of years ago, which most people had never heard of, including me, most people equated it with a heart attack and thought, oh, so you’re back to normal now, then? Great, carry on. But it doesn’t necessarily work like that after nearly dying. I had an aortic dissection, which is the same thing that killed Lindsey Graham. Now it’s in the news everywhere. For the first year or so, many people really seemed to want me to be an inspiration, to have had a near-death experience, but I found myself balking at that, not so sure I “still had work to do here.” Living is enough. Of course, I did learn some things. But anyway, yeah…
Great piece. Love your writing and how you weave the topics together into cohesive messages, and obviously the content of the writing is ❣️❣️❣️ xx Thanks💖 to you and Best to you and Luna 💛
Everything you’ve said here resonates with me. Those obnoxious and well meaning people who want everything to resolve nicely for us make me so mad. Yes, they are well meaning, but they have an agenda, and that agenda is unrealistic for many of us.
I've been thinking about why people have this agenda for us since I wrote this piece. What's in it for them to insist that we're fine, or that we will be if we try hard enough? There's the magical thinking aspect of wanting to reassure themselves that they won't suffer the same fate; but I also think it's because they're tired of the burden of feeling compassion for us. If my MIL can check the box that says I'm better, she can stop feeling burdened by the need to express concern. I think this is also why people get mad at us when we refuse to be inspiration porn, because we're not giving them that easy out.
I think you're right, there's definitely an element of inspiration porn there. They want us to "overcome." I think it's also about how much easier it is to fix something for someone than to sit with someone and hold space for them. I think that's why people are so adamant that I need to do yoga and the'd rather tell me a hundred times to do more yoga then hold space for me for 5 or 10 minutes. Telling me to do yoga feels like they're " doing" something and they don't get that same feeling of satisfaction when all they do is hold space, even though holding space is what I really need them to do.
Yes, exactly. If only people understood that the kindest and most supportive thing they can do for us is to hold space and acknowledge our reality rather than trying to fix us.
I have the same issue with parents. They seem to believe that I'm just one more supplement or treatment from being well. Though when I decided to take time away from to work on my mental health is was all "what is that going to do?" I stopped looking for their approval long ago but it is still frustrating in a world where more support is what would actually help.
If only others could find the same acceptance that we have that not everything is going to get better. In my work with chronically ill clients, often the most supportive thing I can do is to simply acknowledge their reality, and not offer suggestions for how to fix it or pretend it's going to get better.
I restarted therapy recently and interviewed the practitioners briefly before starting sessions. My most important question was 'are you comfortable treating me without CBT given my multiple chronic illnesses that will never resolve?' Only one says yes!
🤦🏼♀️ It's not a cognitive distortion to know your illnesses are not going to get better. In fact, it's a cognitive distortion to insist that they will! You might have better luck with therapists who advertise themselves as practicing psychodynamic therapy. I also like DBT because it's basically Zen Buddhism operationalized for a clinical setting. Radical Acceptance is a foundational skill in DBT.
Beautiful, thought provoking essay. People don’t recognize the hard work we do must do to figure out how to accept our illness. When I finished your essay it made me think that maybe the next work I need to do (not today:) is to figure out how to accept the extremely annoying comments from others.
Thank you:)
I was doing the math and realized that if my MIL has asked me that question at least once a quarter for four years, we've had some version of that conversation at least 16 times. This gave me more compassion for myself for being annoyed with her. If only she would take the hint and stop asking!
My mother in particular is furious every time I refer to myself as chronically disabled. No! That's for old people!
Her attitude led to these chronic illnesses being much worse until I moved out and had my own insurance. I'll never get 'better' as they don't go away, but I do know how to avoid flares and recover faster now that I ever did.
I see this over and over again where denial just leads to more suffering in the form of delayed treatment. My MIL is the poster child for toxic positivity and is so committed to the belief that everything will be fine if she just stays positive. The amount of energy she expends frantically trying to stay positive could power a small city. 🫠
I’ve been in pain since 2000. When my mom was still alive, just like your in laws, refused to accept that I wasn’t magically getting better. It wasn’t until her final years (after 23 years of asking when I would be better) when she had her own chronic pain that she got it.
Much like you I grieve the things I lost, I really miss motorcycling and riding a bike. But my hips, and thoracic outlet syndrome say no. I also have psoriatic arthritis and weird shaped feet, so a manufacturer discontinuing the shoes that work for me brings me to tears.
I feel you on the shoes. My shoe options are so limited now. Thankfully we live in Seattle, which is a very casual place, because I can't tolerate stiff formal shoes anymore. 🫤
I’m so glad you’re writing about this. The comparison with how you acknowledge your dog’s pain more readily than your own due to conditioning is profound. I’m curious if you’ve ever read The Lady’s Handbook for her Mysterious Illness. I’m so curious what you would say about it. I’m also curious to hear more about your thoughts on anti-inflammatory diets.
I haven't read The Lady's Handbook! I will check it out!
I went down the anti-inflammatory diet rabbit hole when I was first diagnosed with arthritis thinking maybe I could avoid the biologic drugs that are the first line of treatment. It made absolutely no measurable difference for my symptoms. As my doctor later said to me, once inflammation reaches the stage of causing chronic illness and joint damage, an anti-inflammatory diet is not going to move the needle. The bulk of my diet is still low-inflammatory food because, you know, why not, but I no longer think that I might cure myself by strictly abstaining from fried or processed foods or eating only organic produce.
Thank you so much for writing this. I injured myself a month ago and have lately been feeling so psychologically low because walking hurts so much. I hate how much brain space and planning is now devoted to pain and limits. It's given me a lot of empathy for what so many people are living with while going about all the business of life, all the time.
I'm so sorry to hear that you're hurt! Hopefully your injury is temporary and really will get better, unlike mine. I kind of wish that everyone had to spend at least one week of their life trying to navigate the world while using a knee scooter because it becomes apparent very quickly how inaccessible spaces are. Especially old European cities--forget it! I want to visit Edinburgh but am not sure I can handle all the stairs. Even visiting NYC last fall was pushing it.
The way that Luna's experience put how your process yours into context is such a valuable takeaway--one that I'll be carrying with me and turning over in my mind for quite some time and I navigate daily chronic pain.
Thank you for that article. It made me understand people with chronic pain better. It showed me also how grateful I am for not being in pain almost all of the time. I hope scientific progress will be on your side.
Thank you for writing! It is endlessly fascinating to me, the compulsion to believe that people must get better, or the compulsion to find a reason to blame ill folks for their suffering. It's preferring hypothetical situations to reality. And when people insist on toxic positivity or moralizing an illness, they prioritize their own *psychological comfort* over responding to the real *physical discomfort* of the person in front of them.
(Because I write about gender-based violence, I will also add that I see a parallel in the behavior of people who choose not to believe women's stories of sexual assault. They are also choosing their own psychological safety over the real psychological, emotional, and possible physical pain of the survivor.)
Yes, you nailed it, 100%. It's all about creating a false sense of security for the person who is well. My MIL is turning 78 this week and has enjoyed remarkably good health her whole life, which she always likes to mention. Most people have enough experience with pain by their 70s that they've been humbled and have more compassion, but she just natters on about how she never gets sick for more than three days and feels just great all the time! "It's because I stay so busy and keep a positive attitude!" 🙄 The smug self-congratulation adds insult to injury.
Oh dear, are we related? 😂
😄
Pain is a constant, although I find it with my fibromyalgia pain not focusing on it or cataloging it keeps it out of my attention at least some of the time. When I have other types of pain, such as a recent bout of costachondriasis, trying to concentrate on other things makes the pain worse. I tried to listen to my body, and fortunately I have reasonable support most of the time. I think my mother-in-law first thought I was overstating my fatigue and struggles with energy, but as she got to know me well she started to be able to tell when I was flagging and doesn't push me so much anymore. My husband is very accepting and never doubts what I tell him about my pain or energy levels, though he does wish we could be out and about together more.
Yes, I could write a whole other essay about how people with chronic pain learn to tune it out. My clients with chronic pain and I sometimes chuckle about how if we body-swapped with a healthy person and they were suddenly subjected to our daily baseline of pain, they would be writhing, but when you live with it all the time, you just get on with it and go about your day. I have a hard time filling out self-report measures for doctors for this reason and find that I under-report pain compared to healthy people. Do they mean on MY 1 - 10 pain scale, or an average person's pain scale? Because I'm living at an average person's 4 all the time.
Oh man, those pain scales are useless without a clear description of each level. I said I was at a level 2 for years. (I was not at 2, hahaha.)
This is such an incredibly insightful essay.
Let me tell you about why I trust the physical therapist/personal trainer that I work with at my chiropractor’s office (and this is in no way an implication to go there or anything like that). I asked him once how do I know when the muscle soreness I experience from working out is too much and will there ever be a point when I don’t feel pain? I have suffered lower back pain for most of my now 50 year old adult life and only started truly getting better in the last 3 years since seeing him and my chiropractor. He answered very honestly that i will always have pain. He said something to the effect of “pain is just the body’s way of communicating with us. It’s how we react to it is what is important and that looks different for everyone”.
I think about that all the time and it gives me hope.
I don’t have an autoimmune disorder and I don’t have any major injuries to contend with. My existence with pain is completely benign compared to yours or anyone who is dealing with serious issues. But the acceptance of pain is a reality. And sometimes I whine (at least to myself) like Luna. And I struggle to let it tell me to sit, rest, be in this stupid painful moment. In some ways, it feels more real than the depression that sneaks in.
I don’t ever expect this American society to believe that any pain is real. If you’re not wearing a cast from a broken arm, people think it’s fake all while experiencing their own acute pain. It’s maddening and disappointing. But that’s a whole other story.
All this to say, thank you for writing this.
This article is so timely for me. I have had severe lower back pain for 25 years and had made my peace with it. But I have recently discovered Pain Reprocessing Therapy and am giving it a go. It's too early to say if it will help, but honestly it's super sensible. I'm concerned though that it's changing my acceptance of my pain. It's probably still worth trying though on balance!
Check back in to let us know how it goes!
Much in this resonates with me. After a sudden illness, as they say, a couple of years ago, which most people had never heard of, including me, most people equated it with a heart attack and thought, oh, so you’re back to normal now, then? Great, carry on. But it doesn’t necessarily work like that after nearly dying. I had an aortic dissection, which is the same thing that killed Lindsey Graham. Now it’s in the news everywhere. For the first year or so, many people really seemed to want me to be an inspiration, to have had a near-death experience, but I found myself balking at that, not so sure I “still had work to do here.” Living is enough. Of course, I did learn some things. But anyway, yeah…
Omg, those are no joke!!!
Great piece. Love your writing and how you weave the topics together into cohesive messages, and obviously the content of the writing is ❣️❣️❣️ xx Thanks💖 to you and Best to you and Luna 💛
Thank you!
Everything you’ve said here resonates with me. Those obnoxious and well meaning people who want everything to resolve nicely for us make me so mad. Yes, they are well meaning, but they have an agenda, and that agenda is unrealistic for many of us.
I've been thinking about why people have this agenda for us since I wrote this piece. What's in it for them to insist that we're fine, or that we will be if we try hard enough? There's the magical thinking aspect of wanting to reassure themselves that they won't suffer the same fate; but I also think it's because they're tired of the burden of feeling compassion for us. If my MIL can check the box that says I'm better, she can stop feeling burdened by the need to express concern. I think this is also why people get mad at us when we refuse to be inspiration porn, because we're not giving them that easy out.
I think you're right, there's definitely an element of inspiration porn there. They want us to "overcome." I think it's also about how much easier it is to fix something for someone than to sit with someone and hold space for them. I think that's why people are so adamant that I need to do yoga and the'd rather tell me a hundred times to do more yoga then hold space for me for 5 or 10 minutes. Telling me to do yoga feels like they're " doing" something and they don't get that same feeling of satisfaction when all they do is hold space, even though holding space is what I really need them to do.
Yes, exactly. If only people understood that the kindest and most supportive thing they can do for us is to hold space and acknowledge our reality rather than trying to fix us.