The underlying philosophy in wellness culture ideas about chronic illness is that you choose to be ill. It paints a false picture that we are in control of our ill bodies.
Urgh, I’m sick of the wellness industry, and I don’t have a chronic illness to deal with. This type of blame and shame is hideous, but pervasive in ‘wellness industry thinking’. The pressure it puts on women is ridiculous. Even if we catch a cold it’s because we didn’t listen to our bodies enough, slow down or drink enough immunity boosting smoothies. Structural inequalities do not exist in the privileged world of the wellness industry. It’s great to read this as we need more counter narratives. I can only imagine how much harder this bs makes living with a chronic illness.
This type of (wellness) bullsh*t winds me up 🙄 How DARE someone say that my (or anyone else's) chronic illness is by choice?! FFS! Apologies for swearing 🙏
Love this, so much of the wellness industry places blame on sufferers of chronic illness and I can't stand it. There's a reason we've all heard unsolicited advice about yoga and changing our diet to "cure" our chronic illness. People in these spaces are so often taught that your health is always something you have control over (and that it is your responsibility to control it) so they assume we're sick because we're doing something wrong. The terrifying truth these people haven't realized yet is that as humans we never have total control of our health. And chronically ill people have to learn this lesson the hard way while wellness culture gaslights & preys on us.
I wish people would stop trying to 'mend' me, or cure me, and try not to be disappointed or upset with me when it doesn't work! Dealing with other people's disappointment is worse than dealing with my own. If I *could* get better, I *would*! But the pretence of normality takes so much effort, that it will leave me in a worse place, not a better one.
Such an important topic! Unfortunately, I don't see it changing anytime soon. There is just such a lack of understanding about chronic illness, and it is so frustrating!
Well said. When I see a 'wellness coach' follow me randomly online I just ignore them. Mostly junk science. That is not to say that alternative therapies aren't helpful; I've tried a few and they did help. I think the danger lies more in the ones who are just plain pushy that only their way works and works best. The practitioners that I worked with were very flexible and adapted to my needs.
I'm really glad you have written about this, Madelleine, because I think this is something that needs to be brought into the open. Having lived with fibromyalgia for 8 years and various other unexplained symptoms for much longer, I can see elements of truth on both sides of the debate (although some of those elements of truth do seem to have been diluted homeopathically!)
When I got fibro, I spent a long time looking within myself to see if I could find any kind of psychological, emotional or spiritual cause. That enquiry led me to realise that being ill gave me permission to change the course of my life - and that was permission I was not giving myself. Having fibro did also make it easier for me to set boundaries and say NO in a way that I had previously felt unable to do.
But I think there is a lot of confusion surrounding what the subconscious is and how it works. The whole point about the label "subconscious" is that it exists below or outside of our conscious awareness - which means we can't ever know what it is, how it works and why it does what it does. We can only guess.
The very idea of a "subconscious choice" seems like nonsense to me. I (my conscious awareness) can make a choice and maybe my subconscious can choose but I and my subconscious are not the same. It's possible that my subconscious is "holding onto" something but I doubt that it is a choice. As far as I can tell, my subconscious works according to a set of automated programs, with the primary aim of self-preservation. It does the best it can, with a limited set of tools at its disposal. Although my subconscious mind seems very clever, I do not believe it is all-knowing.
As for the idea of the body or the subconscious "holding onto" an illness, I don't think that's a very accurate way of putting it. To me it seems more like a case of inertia. Chronic illness becomes a deeply-rooted habit within the body that possesses a huge amount of inertia. Dislodging those habits requires an even greater amount of energy.
What I mean by that is that every physiological condition has a set of corresponding brain circuits and once those circuits start firing, they will keep on firing until some form of powerful intervention can turn them off and create new ones. That has nothing to do with holding onto something - it's just neuroscience.
Perhaps one way to stop these ideas from spreading would be to encourage some kind of open debate with one or more of these self-appointed wellness gurus. I don't know who any of them are because I'm not on Instagram or anywhere else that I'm likely to meet them. But I do wonder if any of these gurus have ever had a chronic illness themselves.
Bearing in mind that most of us here have limited energy to spend on these things, is there a way that we can encourage some kind of open-minded debate? I would certainly be prepared to participate in any way that I can. My interest though would not be in shouting down the wellness gurus but on discovering a deeper truth that might help my body-mind to heal.
P.S. I'm conscious that I might be the only man in the room here, so I hope I am welcome. If not, I understand. Thanks in advance for reading this. I know it takes energy to do so. Best wishes, Rob.
Rob, you are most welcome, of course!! This is a space for all people, also those without chronic illnesses. I must admit, as a former yoga teacher I’ve had many calm debates with a lot of wellness gurus and while incredibly kind and compassionate, the ones I’ve talked to are very set in their view of the world and of illness — and no, none had a chronic illness, but many have had sympotms that they cured using mind body techniques (which is not at all the same as chronic illness). I felt ostracised from my spiritual community because of this and it’s not where I found solice, but stigma and ableism.
Thanks, Madelleine, it's good to know I am welcome :-)
I used to have friends and colleagues who were spiritual teachers or alternative health practitioners, and many of them had rather fixed views of illness. I think a lot of people don't know how they came to believe something in the first place and are unwilling to make themselves feel vulnerable enough to enquire why they are so attached to those beliefs. As I looked within for a possible cause for fibromyalgia, I encountered all sorts of so-called spiritual beliefs I had absorbed over the years including:
1) Illness is the result of Karma, and
2) When you are in alignment with your true self, you will manifest perfect mental and physical health.
Of course the implication here is that anyone with a chronic illness is out of alignment with their true self and, consequently, living a lie.
What does fascinate me is the idea that some illness may be the result of inheriting unresolved emotional trauma from an ancestor such as a great-grandparent. But that's not an easy area to research or find truth in!
Yes, epigenetics and inhereting trauma is very fascinating! I found I had absorbed those beliefs too, especially the alignment one. I’m still working on detoxing it from my mind.
Thanks for writing this. I’m have a chronic illness and these things are wack as shit. Living with chronically is so much harder than not! Like you allude to, they see our (sometimes) non apparent disabilities and deny the idea that our experience is real or difficult.
One thought on referencing functional disorders- I (may) have Functional Neurological Disorder, which was previously called conversion disorder. There has been a tremendous amount of misunderstand around this attributing functional symptoms to psychological issues “converting” to physical symptoms. In reality (and recent and new studies continue to back up) functional disorders are a neurological condition that has to do with how the brains neuro plasticity can go awry (for many reasons, or unknown reasons). Really interesting brain studies show observable differences in the function of the brain of a person with and without functional neurological disorder. ANYWAYS, I knew you weren’t trying to discount this condition at all, but wanted to share some info I find very interesting. Also that people with trauma or psychologically rooted chronic illness or disabilities are so valid.
(This is not addressing your piece) Sometimes the chronic illness community likes to distance themselves from psychological issues to gain credibility, while simultaneously pushing down the credibility of people with psychological issues. There’s difference and similarities and a very nuanced relation between the groups, but i definitely don’t like the idea of pushing forth one community at the expense of another.
Thank you so much for pointing these things out. I greatly appreciate it and wholeheartedly agree with everything you say.
My problem is in no way with the disorder or that trauma can lead to chronic illness (which it absolutely can), my problem is that the Danish health authority has lumped a lot of physiological illnesses under the diagnosis ‘functional disorders’ which has had and still has severe consequences for patients. In Denmark they view functional disorders a little differently than FND. And in Denmark there is a large psychological component attached to the diagnosis. Some parents to ME/CFS patients have for example been given munchausen by proxy diagnosis and been accused of molesting their children because the authorities beleive that that’s how you get a functional disorder. Others have been sectioned in pschyological wards because they believe ME/CFS patients have a funxtional disorder which, they believe, is best treated in a psychological ward (it’s not). If you’re interested you can read more here: https://www.bedperspective.com/p/mecfs-psychosomatic-reallife-consequences
Thank you for writing this, Madelleine!! Don't get me started on those supposed secondary gains ... I have felt so much shame because of this. At one point I started to respond to anyone talking about something they would LOVE to be able to (not) do (like sleep in or something), with: 'Great, you can take sleeping in, but it comes with SO much pain, loneliness, grief and limitations - you can't get one without the other. I'm ready to trade with you any second of any day. Just say the word.' Sometimes it works, other times people are so hung up on that one 'benefit' that they start shaming me for not enjoying or appreciating it enough. Then I just walk away. What else can you do? Thank you for making so many people feel less alone! 💛
As soon as I can get medical professionals to stop doing this to me, I'll begin to work on the entire wellness industry.
Being able bodied is temporary and it's going to be a rude wake up call to folks when they wake up one day and realize all of their wellness stuff does shit to fix that.
And who will they come to when this happens, wanting answers? Us. I am tired, guys.
I have recently really started owning that being this ill is not my fault. I believe in trying to support my body with a good diet, I meditate when I'm able to, I have no choice but to rest and sometimes rest is just grim. The only wellness stuff I take on board is supporting my body but not the crap messaging of blame. We did not choose this. I have been through questioning it all over the years, I have been told it's my fault/ it's in my mind. I refuse to listen to that any more. You are so right in what you've written x
Thanks for this. We need this "blame the patient / everything is fixable with behavior modification" mentality needs to stop. It has caused immeasurable suffering & killed so many with chronic illnesses like myalgic encephalomyelitis.
I am concerned that the "you just need to pace better" narrative is falling into this category.
Pacing is important but it does not cure ME. I have seen people feeling guilty because they are being told pacing is the key to recover & they are still sick. It is making them think that still being sick is their fault.
Educating society about the science of these diseases is needed.
Ooh yes, I’m seeing that one too (pacing). It’s not ok and puts a lot of pressure on people. Also, to be able to pace perfectly can often be a privilege as most people don’t have adequate care — and yes, it doesn’t cure or treats the disease in any way. Thank you for bringing this up!
Her reasons are horrendous!! How she could say these things with a straight face is beyond me. I agree with your counterpoints, but it feels so absurd that you even have to make them. I remember speaking with a medical medium the first year I was severe. She was a contact of one of the kundalini teachers I used to work with in a center I use to direct. She told me that if I didn’t want to be an invalid for the rest of my life, then I need to get up. This is when I was mostly vegetative. I could barely speak to her. It was so upsetting. Thank you for putting it all down in to words in such clear way.
It’s very tricky when it comes to certain functional disorders because they are also misunderstood and have been inappropriately used as a blanket for anything unexplained for a very long time without scientific backing. Recent studies though are now showing what is actually happening in the brain of people accurately diagnosed (like myself) with a functional disorder as well as ME. It is not psychosomatic either. I will be writing more about this in-depth, and the controversy attached (and harm it’s caused on both sides) in the New Year.
You’re absolutely right. And functional neurological disorders (which isn’t the same as the Danish diagnosis of functional disorders or Bodily Distress Syndrome as they now call it) is highly stigmatised and misunderstood. I look forward to reading your piece about it!
Ohh gotcha! I hadn’t realized. They seem to put so many of the functional conditions under the same umbrella in the U.S. Thank you and thanks for clarifying! I hope to shed light on some of the misconceptions about FND and FMD.
Hi, just a sick follower. If you wanted to share this today you could, it's in a few hours.
Kevin has been my friend for over thirty years. I tried to get to the opening weekend of this show last week and just couldn't. Today there is a pay what you can Livestream and a live chat afterwards. I really want to share it with the bed community even if it's short notice! Will you share it? Thank you!!!
Urgh, I’m sick of the wellness industry, and I don’t have a chronic illness to deal with. This type of blame and shame is hideous, but pervasive in ‘wellness industry thinking’. The pressure it puts on women is ridiculous. Even if we catch a cold it’s because we didn’t listen to our bodies enough, slow down or drink enough immunity boosting smoothies. Structural inequalities do not exist in the privileged world of the wellness industry. It’s great to read this as we need more counter narratives. I can only imagine how much harder this bs makes living with a chronic illness.
Thank you! And I couldn’t have put it better myself. Wellness culture is blind to structural inequality,
This type of (wellness) bullsh*t winds me up 🙄 How DARE someone say that my (or anyone else's) chronic illness is by choice?! FFS! Apologies for swearing 🙏
This absolutely requires swearing 🤯
Love this, so much of the wellness industry places blame on sufferers of chronic illness and I can't stand it. There's a reason we've all heard unsolicited advice about yoga and changing our diet to "cure" our chronic illness. People in these spaces are so often taught that your health is always something you have control over (and that it is your responsibility to control it) so they assume we're sick because we're doing something wrong. The terrifying truth these people haven't realized yet is that as humans we never have total control of our health. And chronically ill people have to learn this lesson the hard way while wellness culture gaslights & preys on us.
So well put, thank you this! I too had to learn the hard way that I wasn’t in control of my body — a difficult and heartbreaking lesson to learn.
I wish people would stop trying to 'mend' me, or cure me, and try not to be disappointed or upset with me when it doesn't work! Dealing with other people's disappointment is worse than dealing with my own. If I *could* get better, I *would*! But the pretence of normality takes so much effort, that it will leave me in a worse place, not a better one.
I so agree!
Such an important topic! Unfortunately, I don't see it changing anytime soon. There is just such a lack of understanding about chronic illness, and it is so frustrating!
It really is frustrating!
Well said. When I see a 'wellness coach' follow me randomly online I just ignore them. Mostly junk science. That is not to say that alternative therapies aren't helpful; I've tried a few and they did help. I think the danger lies more in the ones who are just plain pushy that only their way works and works best. The practitioners that I worked with were very flexible and adapted to my needs.
Oh there are absolutely great alternative practitioners out there with great therapies 🌸
5 Reasons the wellness industry might be holding on to their idiotic pseudo-psychological theories:
1. Arrogance
2. Ignorance
3. Weak-mindedness
4. Ableism
5. Self-centeredness/lack of empathy
I'm really glad you have written about this, Madelleine, because I think this is something that needs to be brought into the open. Having lived with fibromyalgia for 8 years and various other unexplained symptoms for much longer, I can see elements of truth on both sides of the debate (although some of those elements of truth do seem to have been diluted homeopathically!)
When I got fibro, I spent a long time looking within myself to see if I could find any kind of psychological, emotional or spiritual cause. That enquiry led me to realise that being ill gave me permission to change the course of my life - and that was permission I was not giving myself. Having fibro did also make it easier for me to set boundaries and say NO in a way that I had previously felt unable to do.
But I think there is a lot of confusion surrounding what the subconscious is and how it works. The whole point about the label "subconscious" is that it exists below or outside of our conscious awareness - which means we can't ever know what it is, how it works and why it does what it does. We can only guess.
The very idea of a "subconscious choice" seems like nonsense to me. I (my conscious awareness) can make a choice and maybe my subconscious can choose but I and my subconscious are not the same. It's possible that my subconscious is "holding onto" something but I doubt that it is a choice. As far as I can tell, my subconscious works according to a set of automated programs, with the primary aim of self-preservation. It does the best it can, with a limited set of tools at its disposal. Although my subconscious mind seems very clever, I do not believe it is all-knowing.
As for the idea of the body or the subconscious "holding onto" an illness, I don't think that's a very accurate way of putting it. To me it seems more like a case of inertia. Chronic illness becomes a deeply-rooted habit within the body that possesses a huge amount of inertia. Dislodging those habits requires an even greater amount of energy.
What I mean by that is that every physiological condition has a set of corresponding brain circuits and once those circuits start firing, they will keep on firing until some form of powerful intervention can turn them off and create new ones. That has nothing to do with holding onto something - it's just neuroscience.
Perhaps one way to stop these ideas from spreading would be to encourage some kind of open debate with one or more of these self-appointed wellness gurus. I don't know who any of them are because I'm not on Instagram or anywhere else that I'm likely to meet them. But I do wonder if any of these gurus have ever had a chronic illness themselves.
Bearing in mind that most of us here have limited energy to spend on these things, is there a way that we can encourage some kind of open-minded debate? I would certainly be prepared to participate in any way that I can. My interest though would not be in shouting down the wellness gurus but on discovering a deeper truth that might help my body-mind to heal.
P.S. I'm conscious that I might be the only man in the room here, so I hope I am welcome. If not, I understand. Thanks in advance for reading this. I know it takes energy to do so. Best wishes, Rob.
Rob, you are most welcome, of course!! This is a space for all people, also those without chronic illnesses. I must admit, as a former yoga teacher I’ve had many calm debates with a lot of wellness gurus and while incredibly kind and compassionate, the ones I’ve talked to are very set in their view of the world and of illness — and no, none had a chronic illness, but many have had sympotms that they cured using mind body techniques (which is not at all the same as chronic illness). I felt ostracised from my spiritual community because of this and it’s not where I found solice, but stigma and ableism.
Thanks, Madelleine, it's good to know I am welcome :-)
I used to have friends and colleagues who were spiritual teachers or alternative health practitioners, and many of them had rather fixed views of illness. I think a lot of people don't know how they came to believe something in the first place and are unwilling to make themselves feel vulnerable enough to enquire why they are so attached to those beliefs. As I looked within for a possible cause for fibromyalgia, I encountered all sorts of so-called spiritual beliefs I had absorbed over the years including:
1) Illness is the result of Karma, and
2) When you are in alignment with your true self, you will manifest perfect mental and physical health.
Of course the implication here is that anyone with a chronic illness is out of alignment with their true self and, consequently, living a lie.
What does fascinate me is the idea that some illness may be the result of inheriting unresolved emotional trauma from an ancestor such as a great-grandparent. But that's not an easy area to research or find truth in!
Yes, epigenetics and inhereting trauma is very fascinating! I found I had absorbed those beliefs too, especially the alignment one. I’m still working on detoxing it from my mind.
Thanks for writing this. I’m have a chronic illness and these things are wack as shit. Living with chronically is so much harder than not! Like you allude to, they see our (sometimes) non apparent disabilities and deny the idea that our experience is real or difficult.
One thought on referencing functional disorders- I (may) have Functional Neurological Disorder, which was previously called conversion disorder. There has been a tremendous amount of misunderstand around this attributing functional symptoms to psychological issues “converting” to physical symptoms. In reality (and recent and new studies continue to back up) functional disorders are a neurological condition that has to do with how the brains neuro plasticity can go awry (for many reasons, or unknown reasons). Really interesting brain studies show observable differences in the function of the brain of a person with and without functional neurological disorder. ANYWAYS, I knew you weren’t trying to discount this condition at all, but wanted to share some info I find very interesting. Also that people with trauma or psychologically rooted chronic illness or disabilities are so valid.
(This is not addressing your piece) Sometimes the chronic illness community likes to distance themselves from psychological issues to gain credibility, while simultaneously pushing down the credibility of people with psychological issues. There’s difference and similarities and a very nuanced relation between the groups, but i definitely don’t like the idea of pushing forth one community at the expense of another.
Thank you so much for pointing these things out. I greatly appreciate it and wholeheartedly agree with everything you say.
My problem is in no way with the disorder or that trauma can lead to chronic illness (which it absolutely can), my problem is that the Danish health authority has lumped a lot of physiological illnesses under the diagnosis ‘functional disorders’ which has had and still has severe consequences for patients. In Denmark they view functional disorders a little differently than FND. And in Denmark there is a large psychological component attached to the diagnosis. Some parents to ME/CFS patients have for example been given munchausen by proxy diagnosis and been accused of molesting their children because the authorities beleive that that’s how you get a functional disorder. Others have been sectioned in pschyological wards because they believe ME/CFS patients have a funxtional disorder which, they believe, is best treated in a psychological ward (it’s not). If you’re interested you can read more here: https://www.bedperspective.com/p/mecfs-psychosomatic-reallife-consequences
Thank you for writing this, Madelleine!! Don't get me started on those supposed secondary gains ... I have felt so much shame because of this. At one point I started to respond to anyone talking about something they would LOVE to be able to (not) do (like sleep in or something), with: 'Great, you can take sleeping in, but it comes with SO much pain, loneliness, grief and limitations - you can't get one without the other. I'm ready to trade with you any second of any day. Just say the word.' Sometimes it works, other times people are so hung up on that one 'benefit' that they start shaming me for not enjoying or appreciating it enough. Then I just walk away. What else can you do? Thank you for making so many people feel less alone! 💛
Thank you! Amd I so hear you! I often get “oh I wohld love to lie in bed all day” and it makes me livid!
As soon as I can get medical professionals to stop doing this to me, I'll begin to work on the entire wellness industry.
Being able bodied is temporary and it's going to be a rude wake up call to folks when they wake up one day and realize all of their wellness stuff does shit to fix that.
And who will they come to when this happens, wanting answers? Us. I am tired, guys.
So true! I’m tired too!
I have recently really started owning that being this ill is not my fault. I believe in trying to support my body with a good diet, I meditate when I'm able to, I have no choice but to rest and sometimes rest is just grim. The only wellness stuff I take on board is supporting my body but not the crap messaging of blame. We did not choose this. I have been through questioning it all over the years, I have been told it's my fault/ it's in my mind. I refuse to listen to that any more. You are so right in what you've written x
Good for you! I too have done a lot of cleaning out wellness culture from my mind.
Thanks for this. We need this "blame the patient / everything is fixable with behavior modification" mentality needs to stop. It has caused immeasurable suffering & killed so many with chronic illnesses like myalgic encephalomyelitis.
I am concerned that the "you just need to pace better" narrative is falling into this category.
Pacing is important but it does not cure ME. I have seen people feeling guilty because they are being told pacing is the key to recover & they are still sick. It is making them think that still being sick is their fault.
Educating society about the science of these diseases is needed.
Ooh yes, I’m seeing that one too (pacing). It’s not ok and puts a lot of pressure on people. Also, to be able to pace perfectly can often be a privilege as most people don’t have adequate care — and yes, it doesn’t cure or treats the disease in any way. Thank you for bringing this up!
Her reasons are horrendous!! How she could say these things with a straight face is beyond me. I agree with your counterpoints, but it feels so absurd that you even have to make them. I remember speaking with a medical medium the first year I was severe. She was a contact of one of the kundalini teachers I used to work with in a center I use to direct. She told me that if I didn’t want to be an invalid for the rest of my life, then I need to get up. This is when I was mostly vegetative. I could barely speak to her. It was so upsetting. Thank you for putting it all down in to words in such clear way.
It’s very tricky when it comes to certain functional disorders because they are also misunderstood and have been inappropriately used as a blanket for anything unexplained for a very long time without scientific backing. Recent studies though are now showing what is actually happening in the brain of people accurately diagnosed (like myself) with a functional disorder as well as ME. It is not psychosomatic either. I will be writing more about this in-depth, and the controversy attached (and harm it’s caused on both sides) in the New Year.
You’re absolutely right. And functional neurological disorders (which isn’t the same as the Danish diagnosis of functional disorders or Bodily Distress Syndrome as they now call it) is highly stigmatised and misunderstood. I look forward to reading your piece about it!
Ohh gotcha! I hadn’t realized. They seem to put so many of the functional conditions under the same umbrella in the U.S. Thank you and thanks for clarifying! I hope to shed light on some of the misconceptions about FND and FMD.
So so very true x
Hi, just a sick follower. If you wanted to share this today you could, it's in a few hours.
Kevin has been my friend for over thirty years. I tried to get to the opening weekend of this show last week and just couldn't. Today there is a pay what you can Livestream and a live chat afterwards. I really want to share it with the bed community even if it's short notice! Will you share it? Thank you!!!
https://rumble.com/v5q19pt-the-people-vs-nature-by-kevin-augustine-plus-a-talkback-w-jimmy-dore.html