A shadow side of mind-body healing is self-blame and shame and an ableist idea that chronically ill people are still sick because they choose to be. Here’s my story.
Simplistically, if I could think myself better don’t you *(generic you) think I would have done by now?
I’m fed up of being told I choose to be ill. That I find this life easy and I don’t want to be well because of all the secondary gains. To those people I want to know what those gains are? Lack of money? Lack of adventure? Lots of pain? Feeling absolutely awful all day every day to varying degrees? Those gains? Why on earth would anyone choose this life? And for decades? What would be the advantage of that?
I too have tried all sorts. Been to ME/CFS therapy (provided by the clinic) where the lady was most upset I didn’t have childhood trauma, or attachment issues and especially that she couldn’t make me cry. I don’t have stuck grief and before I got ME, literally a year before, I had done a lot of hard work on myself and sorted myself out so to speak. Life was good, why would I choose to throw it away?
I’ve spent thousands on alternative stuff, I eat a handful of vitamins every day, I've injected B12 daily, taken off license LDN, eaten special diets, I’ve tried to push through, I’ve pretended I’m not ill, I’ve done it all and I’ve felt the absolute shame of not getting better but worse. I’ve sobbed with frustration. I’ve tried accepting it and living a smaller but happier life - apparently that’s not good enough either and I should be trying harder. And yet just breathing some days requires Herculean effort, I can’t try harder I use it all everyday. I’m fed up of being gaslit, fed up of being blamed, fed up of being told it’s all my fault somehow. I am physically ill and no amount of mind body healing is going to cure me.
I’m attempting to not follow this mind-weasel. I do genuinely believe the mind-body connection. I know that even though my body is wrecked, when my mind is clear and calm I feel better. When I am trapped in anxiety and stress my body feels worse.
I know changing diet can help me and has in the past. I know that I could do with improving significantly my vitamin B12 and D intake. I’m pretty sure if I could leave the house and be in nature every day it would improve my well-being. I know Qi-gong and acupuncture work wonders for me.
But none of these things will cure me if I have ME (if I officially have it as getting diagnosis incredibly hard).
Various doctors have told me ‘to lie in the sun’ when in tears with chronic pain. ‘That I think to much’ was another and ‘not to use big words I don’t understand’. The disbelief, the banging head against rocks and the sheer persistence I will need to get diagnosed is horrendous.
Thank you for writing and sharing your experiences- I am doing similar here in my Substack and it helps me process it all 💜💜💜
Aargh those damn doctors and the things they say 😤 Thank you so much for sharing! And yes, such a big difference between using mind body techniques/philosophies for management and more wellbeing and then as a cure… the latter is just not possible with our kind of disease.
What an incredible read. & powerful thought-provoking questions.
Re: the mind/body healing, I guess a lot of the healing modalities and approaches I’ve embodied would be considered mind/body. To me, it’s not all in the mind or about mindset though. Or doing more (or not enough). It’s deeper and so much more complex than that. Ive found it to be as deep and complex as is the illness. Fortunately I haven’t heard of other therapists suggest that patience’s/clients aren’t doing enough of the work or won’t let go (however my circles are small). Gosh, it’s taken me YEARS to let go of some of the stuff. Some of it I still haven’t let go of and I’ve been aware of it for years. I can embody all the practices for DAYS following emotional triggers and still be triggered into attack. It’s been a long - long - game and coming at it from an angle where I don’t need fixing (I am whole as I am which took me a few years to learn), or trying to control or manage (I feel that this a medical approach and just the way the medical system works over here in the uk, we parted ways after 20years). I so desperately want to write a blog about cure but haven’t been able to articulate all that I want to say.
The blame/responsibility is a big one. I do feel there is a difference. Taking responsibility (or taking back the reigns of creation for my own health as I like to term it), isn’t the same as blaming ourselves or seeing it as our/my fault. A lot changed for me when i took responsibility, at the same time as realising no one was coming to my rescue and that it was me on my own. It was, however, only the very beginning of my journey. And there’s no magic in it in that moment 😆 it was a deeply uncomfortable part of my journey. There was transformation happening but that took a long time to manifest. It leaves me wondering, the world we’re living in, if we (as individuals) don’t take responsibility, who will?
To bring more compassion into discussions around chronic illness, we need to open up brave space for it and then be able to hold it. To see one another as the whole person that we/they are, and witness that person, their story and their journey, without judgement, criticism, ridicule or blame. You’re doing a fantastic job of this. And I appreciate the work that goes into it.
Thank you so much for your reflections as always! 🌸 I always enjoy reading them! I have the privilege to take responsibility for my body in that I get proper care (through my parents), we have resources for proper food, I get all the rest I need because we have the resources, and we have the resources to get private medical help. Not everybody can do all that. Responsibility is a privilege in my view and not something we can ask of everyone. I so agree with everything you say about compassion and creating compassionate spaces 🌸
I never thought of it like that, about being able to take responsibility as being a privilege (privilege is something I’d to reflect on Deeply at some point). I do see the time I was granted due to complete disability by illness as a gift now though. A gift I wouldn’t have had open up to me without it.
To make clear and for the avoidance of doubt (just in case), I don’t see it that just because I’ve taken responsibility (per say) - or anything else that I’ve done - that others should too. This journey is not for the faint hearted and there is little support available to hold space for and facilitate such a catapulting of self into the unknown. The current systems we have in place do not support wellness or any potential ability to create it. Something I hope to change and make different for others in my own work, but somewhere I appreciate we are far away from right now.
The key to what? What a question to ponder. I think for me, it was the key to releasing me from victimhood. Though I haven’t spent much of my life that way, I was in victim mode in the years running up to complete disability by ill health. Receiving crystal clear confirmation that noone was coming to my rescue and in taking back the reigns of creation (& responsibility) for my own health was empowering in its own way. Victim mode meant I could do nothing about it, creator mode meant I could do something. I’ve never looked at any aspect of my journey as a cure though or like it was magically going to make me better. So for me this was near the beginning of a very long road.
I did eventually experience some significant breakthroughs, but I’ve also experienced 3 relapses and some (a lot of) very dark times and never ending waves of discomfort. It’s been a 24/7 job to become as well as I have but, like you, I recognised that so was chronic illness. i continued on regardless of there being no clear path, no guarantee and no one that had a clue about what I was living with or going through (I had to work it out myself - a big chunk of the 24/7 role).
The person who holds space for me in various capacities has said that if I could bottle all I’ve learnt into a potion, people would pay millions. I haven’t found any other way than to write about it though, so this is what I give back.
I hope in coming together through spaces like this, holding space for one another, sharing our stories, that we will gradually make some movement forward to better understanding the horror of the lived experiences so many of us face on the back of the systems we have created.
I’m late to this post as I just came across your Substack but I just want to say thank you for writing it and add my thoughts.
I think about this topic all the time. I have been a massage therapist for many years though I stopped practicing in 2020. The wellness cure type thinking is very strong in that world, including blaming clients when they don’t get better. I now struggle with daily chronic pain among other conditions and see how harmful and naive that framing is.
I think people just really don’t want to believe health is out of our control in many ways. It is a threatening concept to many who would rather continuing thinking that if they just do everything “right” they will not suffer health issues.
Thank you so much for your reflections! And yea, I completely agree with you about the feeling of control. Most people cling to the thought that health is fully in their control — it’s less scary.
Oh I have a complex relationship with this. I feel like my symptoms are related to poor emotional regulation, lots of trauma which then lead to poo lifestyle choices. The mix causing an explosion of symptoms in my early thirties.
However, I don’t feel like if I manage to master these emotions, heal my inner child or resolve my traumas will my chronic illness disappear.
I think it’s a verrrrrry fine line between being mentally well to help manage the physical illness and blaming the person.
We do live in ableist society and I have a lot of examples of why this type of theories are quite damaging. I also despise the word CURE.
There are definitely lots of ailments and sympotms and illnesses that have a psychosomatic aetiology or triggers, there is absolutely nothing wrong with that. My issue is with the blame and stigma and metaphors used to paint a misleading picture of patients. I so agree with you that the line is veeeeery fine…
I agree! I think there’s an element of blame and it’s that that’s problematic. I’ve had doctors say ‘you’ve copied your mum’ (she’s got a chronic illness) or ‘women experience more pain’ but as an answer/blame. When I said ‘okay, so are you going to refer me to a psychologist’ they looked shocked.
From my perspective I have all the traumas, three major ACEs by the time I was 14. I also have inherited genetic disease markers from both parents. A career that was very stressful that involved a lot of travel and responsibilities for both the people under my care, (a lot of high stress people pleasing and commiseration) and a fiscal responsibility for millions of dollars a year. Stressful. Then there was the creative demands of my actual job which evolved around me, my output.
All the bases required for an auto immune disease to manifest covered. I did not know this propensity, and I was not warned. I started to fall down.
In retrospect prevention would have been simple?
I had a fantastic life and career. BUT if I had known what I know now, would I have lived my life differently?
I have MS, and I am coming to believe that I have always been on the spectrum. When I asked a “professional” about this, they said I don’t present as Autistic. They don’t study highly functional women with autism. That was pre pandemic.
It has been ten years, and all I have gleaned so far is that they do not know. Good intentions though.
FYI I tried the latest pharmaceutical for two years which nearly killed me, and I am now recovering from that intervention. Tried another for a year same result. Exercise and supplements. The Whals protocol in terms of diet. Etc etc.
Currently experimenting with gut health and Alzheimer’s probiotics. P128
So all the experts don’t know, and I don’t know. I have been working on acceptance, but it is hard.
It is a full time occupation having a chronic disease, I am alone and the fair weather friendships have disappeared. BUT
I do not live in the Middle East or Ukraine or the US. I live in the north where a six month winter has been reduced to a few weeks. I have food and shelter.
My difficulties seem trivial by comparison, and I t seems so selfish to want anything at 69 years of age. So I research memetic desires, how my identity and desire were hijacked by the profiteers. The unpaid labour, the emotional labour required as a woman, my resistance to same as a feminist…
Thank you so much for sharing your experience! Fear bazookas — love that one. And yes, acceptance is a journey and I’m not sure it completely ends in my experience…
A sincere write-up. I'm sure many can relate. It’s important to talk about these things, and I’m glad you opened up about it. I also understand the anger and frustration with the subject matter.
Since you asked, I will chime in with my views and experiences. I understand that our views will differ here, and I offer my opinion, which is just that - an opinion and my personal experience. Nothing more, nothing less.
What is your experience with mind body healing and how have you used it? (Good or bad, all is welcome)
My experience is exceptionally good. I healed my autoimmune disease (Chron’s) that is supposed to be incurable, and modern medicine had zero solutions for me in just two years after suffering for over 15. It took a burnout and a meeting with Mrs. Death to get me there, but I finally did. For those interested, I hope you’ll forgive me, I wrote about it here:
I have seen and experienced things that could, if I were the religious type, only be described as miracles. I now understand they are nothing more than a logical consequence of altering the mind, which governs everything. I see patterns connecting everywhere. Once you see it, you can’t unsee it, no matter how much you try.
But you can refrain from telling people what you believe, which is what I do unless someone asks me directly. Sometimes, it would feel cruel, as your post confirmed, and it wouldn't do any good anyway. It is painful to watch people suffer, when you believe you know what is the cause of it, but they just can't accept, see, or do anything about it. There is always the possibility you're completely wrong, of course, so a littel humility never hurts.
Where, in your view, is the line between taking responsibility for your body and self-blame?
Knowing that your mind dictates how your body does everything, the good and the bad) only means that you now see the mechanism at work. There is no intent, harm, blame, or guilt here. Whatever we do to ourselves, we don’t do it intentionally or even consciously. We think, feel, believe, and live as we were taught to. Mostly, we do the best we can and know how to. Altering decades of programming is a Herculean task for any of us. There is no shame in failing, nor in never trying.
Not all want to get better - this is a real phenomenon. I’ve seen a comment asking, “Why in the hell would someone want to be sick or poor,” as an example. The way I understand this, in a very abbreviated form, is that
- We get something from it on a deep, subconscious, emotional level. No, we’re not aware of it, but it’s there. It takes a really deep dive to find these patterns. None of them are logical or correct, nor do they make any rational sense. When I catch mine, I feel like an idiot. Still, they are almost impossible to overcome, as they are a integral part of my worldview.
- Mostly, I believe it’s an identity problem. We identify with our diseases, conditions, and labels (which is why I hate them). They become a part of who we believe we are. People don’t like change. We also don’t like to lose a piece of ourselves. Healing, in a way, is depriving us of something we perceive as who we are, and we will fight it with everything we have until we realize it (often, even after that). I wrote about it here: https://open.substack.com/pub/zzmeditations/p/stop-identifying-labels-youre-not-your-condition?r=1qer9z&utm_campaign=post&utm_medium=web
- Most of us, however, don’t want to be or stay sick. We just entertain thoughts and beliefs that are so engraved in our minds that they almost live on their own. We don’t make the connections and often don’t want to. As you mentioned, it feels better to blame it on someone else, even God, randomness, or some other boogyman, than to accept responsibility ourselves.
Our minds may be at the cause of everything, but I don’t quite get the whole self-blame thing, though. I do get angry at myself for not being able to overcome my mental fallacies and habits (I accept that everything is my fault), so maybe I do. Hm. I react with anger, someone might react in others ways.
I like your awareness of acceptance and surrender. I believe they play a large part in the healing process.
Where is the line between feeling empowered to heal and acceptance of the state of your body?
For me, they are both the same thing. Realizing that my mind controls my body empowers me and gives me hope for eventual change. Acceptance is being okay with where we are in this moment. The two ideas aren’t in conflict. It might be a ballancing act, though.
I found immense peace in accepting that there is a very good chance I’ll forever have to live with severe limitations. I stopped fighting it completely. I stopped giving my condition more energy and attention. I accepted my cross and found a way even to be grateful for it (as in, many have it much worse than me). I adapted my life around it and simply followed the plan I set out (recovery, diet, mental processes, meditations…) without forcing or even wanting to heal. Honestly, at some point, I forgot about it. I focused on my mind and left the results to themselves. When I realized I was healed, it came as a shock to me.
How can we bring more compassion into discussions about chronic illness?
I think the best we can do is let other people live their lives as they see fit. If they don’t want to face their demons, work on their mind, or heal for whatever reason, we let them be. It’s okay.
I wouldn’t dream of enforcing my views on anyone. At best, I offer my perspective and opinion, but I fully realize most people won’t be able or willing even to entertain the idea. And that's okay.
Where someone would see a person who is weak and incompetent (as you alluded to), I see someone who has chosen their path. In most cases, their worldview doesn’t allow for healing by way of changing the mind. Both paths are painful. They chose their pain, in a way. I respect it and try not to judge it.
The reality of the power of our minds is not a pleasant understanding. It doesn’t feel good. It breaks you down, walks all over you, burns you from the inside out, and leaves you dead in a ditch. If you really open yourself up to what it means that your mind controls your body and the whole freaking world around you, you can quickly end up in a dark alley. It takes incredible courage and willingness to entertain some crazy ideas and take full responsibility for everyting.
Besides, it’s entirely possible that in your world, the mind does nothing, and the body is a completely separate entity. We all live in our own worlds. What is true for me may not be true for you. After all, your mind creates the rules of the game. ;)
I do hope you find your way out of your illness. You deserve it. Good luck.
Thank younfor your reflections and for sharing your experience. I am so happy to hear that you have recovered from your autoimmune illness, I find some of the things you say problematic, as you already know. “If they don’t want to face their demons, work on their mind, or heal for whatever reason, we let them be.” And “ It is painful to watch people suffer, when you believe you know what is the cause of it, but they just can't accept, see, or do anything about it.” But I am glad you are open to being wrong. It seems like you equate healing with recovery… I have spent a long time, and still do healing my wounds, inner demons, all of it. It’s my path in life to live from the inside out, but none of it has made a dent in my physical illness. I know plenty of people who walk the same path, who heal their minds/insides, but nothing in their physical bodies change. This doesn’t mean we aren’t healing, aren’t willing to or don’t want to do anything about it. I am glad you seem to have figured out how your world works, but I hope you stay humble by meditating on this sentence: “ There is always the possibility you're completely wrong, of course, so a littel humility never hurts.” Just because something worked for you doesn’t mean it’s a universal truth.
I hope I didn't step on your toes, unintentionaly. I see now I should have worded things differently, as I sound exactly like the "baddies" from your original post. Thank you for understanding that the intention was good, not malevolent.
Don't worry, my moto is and remains: "All I know for certain is that I know nothing!" :)
Eugh, thank you so much for writing this, Madelleine, I really, really needed to hear it.
It’s especially difficult (dangerous, even) when our algorithm can narrow what we see online until it feels like this mind-body healing is everywhere, the answer, like it’s helping everyone else and it’s a personal failing that I can’t seem to think my way out of this.
Want to howl into the night with the frustration of it all. Really helps to have your clarity, thank you x
I’m somglad it resonated and helped, Kate! I sooo understand the whole feeling like it’s a personal failing when you see all these stories online. I’m howling with you 🌸❤️
Well that little screed has been brewing for awhile. Thank you for the prompt and the place to spew like a rusty tap that has not been turned on in ten years. A weight has shifted. Thank you.
I hear every word. I see you. Acceptance is hard. Chronic illness is a full time job. As much as others might have it worse, you still deserve to have it better. As do they.
Simplistically, if I could think myself better don’t you *(generic you) think I would have done by now?
I’m fed up of being told I choose to be ill. That I find this life easy and I don’t want to be well because of all the secondary gains. To those people I want to know what those gains are? Lack of money? Lack of adventure? Lots of pain? Feeling absolutely awful all day every day to varying degrees? Those gains? Why on earth would anyone choose this life? And for decades? What would be the advantage of that?
I too have tried all sorts. Been to ME/CFS therapy (provided by the clinic) where the lady was most upset I didn’t have childhood trauma, or attachment issues and especially that she couldn’t make me cry. I don’t have stuck grief and before I got ME, literally a year before, I had done a lot of hard work on myself and sorted myself out so to speak. Life was good, why would I choose to throw it away?
I’ve spent thousands on alternative stuff, I eat a handful of vitamins every day, I've injected B12 daily, taken off license LDN, eaten special diets, I’ve tried to push through, I’ve pretended I’m not ill, I’ve done it all and I’ve felt the absolute shame of not getting better but worse. I’ve sobbed with frustration. I’ve tried accepting it and living a smaller but happier life - apparently that’s not good enough either and I should be trying harder. And yet just breathing some days requires Herculean effort, I can’t try harder I use it all everyday. I’m fed up of being gaslit, fed up of being blamed, fed up of being told it’s all my fault somehow. I am physically ill and no amount of mind body healing is going to cure me.
AHMEN!!! I agree 100% with everything you say! Urgh urgh urgh!
I’m attempting to not follow this mind-weasel. I do genuinely believe the mind-body connection. I know that even though my body is wrecked, when my mind is clear and calm I feel better. When I am trapped in anxiety and stress my body feels worse.
I know changing diet can help me and has in the past. I know that I could do with improving significantly my vitamin B12 and D intake. I’m pretty sure if I could leave the house and be in nature every day it would improve my well-being. I know Qi-gong and acupuncture work wonders for me.
But none of these things will cure me if I have ME (if I officially have it as getting diagnosis incredibly hard).
Various doctors have told me ‘to lie in the sun’ when in tears with chronic pain. ‘That I think to much’ was another and ‘not to use big words I don’t understand’. The disbelief, the banging head against rocks and the sheer persistence I will need to get diagnosed is horrendous.
Thank you for writing and sharing your experiences- I am doing similar here in my Substack and it helps me process it all 💜💜💜
Aargh those damn doctors and the things they say 😤 Thank you so much for sharing! And yes, such a big difference between using mind body techniques/philosophies for management and more wellbeing and then as a cure… the latter is just not possible with our kind of disease.
Forgot to share my Substack link with you as thought you might enjoy reading as talks about this - https://open.substack.com/pub/ellymarie?r=2opwp2&utm_medium=ios
Awesome!
What an incredible read. & powerful thought-provoking questions.
Re: the mind/body healing, I guess a lot of the healing modalities and approaches I’ve embodied would be considered mind/body. To me, it’s not all in the mind or about mindset though. Or doing more (or not enough). It’s deeper and so much more complex than that. Ive found it to be as deep and complex as is the illness. Fortunately I haven’t heard of other therapists suggest that patience’s/clients aren’t doing enough of the work or won’t let go (however my circles are small). Gosh, it’s taken me YEARS to let go of some of the stuff. Some of it I still haven’t let go of and I’ve been aware of it for years. I can embody all the practices for DAYS following emotional triggers and still be triggered into attack. It’s been a long - long - game and coming at it from an angle where I don’t need fixing (I am whole as I am which took me a few years to learn), or trying to control or manage (I feel that this a medical approach and just the way the medical system works over here in the uk, we parted ways after 20years). I so desperately want to write a blog about cure but haven’t been able to articulate all that I want to say.
The blame/responsibility is a big one. I do feel there is a difference. Taking responsibility (or taking back the reigns of creation for my own health as I like to term it), isn’t the same as blaming ourselves or seeing it as our/my fault. A lot changed for me when i took responsibility, at the same time as realising no one was coming to my rescue and that it was me on my own. It was, however, only the very beginning of my journey. And there’s no magic in it in that moment 😆 it was a deeply uncomfortable part of my journey. There was transformation happening but that took a long time to manifest. It leaves me wondering, the world we’re living in, if we (as individuals) don’t take responsibility, who will?
To bring more compassion into discussions around chronic illness, we need to open up brave space for it and then be able to hold it. To see one another as the whole person that we/they are, and witness that person, their story and their journey, without judgement, criticism, ridicule or blame. You’re doing a fantastic job of this. And I appreciate the work that goes into it.
Thank you so much for your reflections as always! 🌸 I always enjoy reading them! I have the privilege to take responsibility for my body in that I get proper care (through my parents), we have resources for proper food, I get all the rest I need because we have the resources, and we have the resources to get private medical help. Not everybody can do all that. Responsibility is a privilege in my view and not something we can ask of everyone. I so agree with everything you say about compassion and creating compassionate spaces 🌸
I never thought of it like that, about being able to take responsibility as being a privilege (privilege is something I’d to reflect on Deeply at some point). I do see the time I was granted due to complete disability by illness as a gift now though. A gift I wouldn’t have had open up to me without it.
To make clear and for the avoidance of doubt (just in case), I don’t see it that just because I’ve taken responsibility (per say) - or anything else that I’ve done - that others should too. This journey is not for the faint hearted and there is little support available to hold space for and facilitate such a catapulting of self into the unknown. The current systems we have in place do not support wellness or any potential ability to create it. Something I hope to change and make different for others in my own work, but somewhere I appreciate we are far away from right now.
Very interesting. I have had privilege regarding certain supports and now I do not have them. Those supports cost money that I no longer have.
That said, taking personal responsibility for my health has been key, but the key to what?
IDK as the younger writers say.
The key to what? What a question to ponder. I think for me, it was the key to releasing me from victimhood. Though I haven’t spent much of my life that way, I was in victim mode in the years running up to complete disability by ill health. Receiving crystal clear confirmation that noone was coming to my rescue and in taking back the reigns of creation (& responsibility) for my own health was empowering in its own way. Victim mode meant I could do nothing about it, creator mode meant I could do something. I’ve never looked at any aspect of my journey as a cure though or like it was magically going to make me better. So for me this was near the beginning of a very long road.
I did eventually experience some significant breakthroughs, but I’ve also experienced 3 relapses and some (a lot of) very dark times and never ending waves of discomfort. It’s been a 24/7 job to become as well as I have but, like you, I recognised that so was chronic illness. i continued on regardless of there being no clear path, no guarantee and no one that had a clue about what I was living with or going through (I had to work it out myself - a big chunk of the 24/7 role).
The person who holds space for me in various capacities has said that if I could bottle all I’ve learnt into a potion, people would pay millions. I haven’t found any other way than to write about it though, so this is what I give back.
I hope in coming together through spaces like this, holding space for one another, sharing our stories, that we will gradually make some movement forward to better understanding the horror of the lived experiences so many of us face on the back of the systems we have created.
I’m late to this post as I just came across your Substack but I just want to say thank you for writing it and add my thoughts.
I think about this topic all the time. I have been a massage therapist for many years though I stopped practicing in 2020. The wellness cure type thinking is very strong in that world, including blaming clients when they don’t get better. I now struggle with daily chronic pain among other conditions and see how harmful and naive that framing is.
I think people just really don’t want to believe health is out of our control in many ways. It is a threatening concept to many who would rather continuing thinking that if they just do everything “right” they will not suffer health issues.
Thank you so much for your reflections! And yea, I completely agree with you about the feeling of control. Most people cling to the thought that health is fully in their control — it’s less scary.
Oh I have a complex relationship with this. I feel like my symptoms are related to poor emotional regulation, lots of trauma which then lead to poo lifestyle choices. The mix causing an explosion of symptoms in my early thirties.
However, I don’t feel like if I manage to master these emotions, heal my inner child or resolve my traumas will my chronic illness disappear.
I think it’s a verrrrrry fine line between being mentally well to help manage the physical illness and blaming the person.
We do live in ableist society and I have a lot of examples of why this type of theories are quite damaging. I also despise the word CURE.
There are definitely lots of ailments and sympotms and illnesses that have a psychosomatic aetiology or triggers, there is absolutely nothing wrong with that. My issue is with the blame and stigma and metaphors used to paint a misleading picture of patients. I so agree with you that the line is veeeeery fine…
I agree! I think there’s an element of blame and it’s that that’s problematic. I’ve had doctors say ‘you’ve copied your mum’ (she’s got a chronic illness) or ‘women experience more pain’ but as an answer/blame. When I said ‘okay, so are you going to refer me to a psychologist’ they looked shocked.
Yes. I call them the fear bazookas.
From my perspective I have all the traumas, three major ACEs by the time I was 14. I also have inherited genetic disease markers from both parents. A career that was very stressful that involved a lot of travel and responsibilities for both the people under my care, (a lot of high stress people pleasing and commiseration) and a fiscal responsibility for millions of dollars a year. Stressful. Then there was the creative demands of my actual job which evolved around me, my output.
All the bases required for an auto immune disease to manifest covered. I did not know this propensity, and I was not warned. I started to fall down.
In retrospect prevention would have been simple?
I had a fantastic life and career. BUT if I had known what I know now, would I have lived my life differently?
I have MS, and I am coming to believe that I have always been on the spectrum. When I asked a “professional” about this, they said I don’t present as Autistic. They don’t study highly functional women with autism. That was pre pandemic.
It has been ten years, and all I have gleaned so far is that they do not know. Good intentions though.
FYI I tried the latest pharmaceutical for two years which nearly killed me, and I am now recovering from that intervention. Tried another for a year same result. Exercise and supplements. The Whals protocol in terms of diet. Etc etc.
Currently experimenting with gut health and Alzheimer’s probiotics. P128
So all the experts don’t know, and I don’t know. I have been working on acceptance, but it is hard.
It is a full time occupation having a chronic disease, I am alone and the fair weather friendships have disappeared. BUT
I do not live in the Middle East or Ukraine or the US. I live in the north where a six month winter has been reduced to a few weeks. I have food and shelter.
My difficulties seem trivial by comparison, and I t seems so selfish to want anything at 69 years of age. So I research memetic desires, how my identity and desire were hijacked by the profiteers. The unpaid labour, the emotional labour required as a woman, my resistance to same as a feminist…
I could go on.
This is the topic of my life, my bed perspective.
Thank you so much for sharing your experience! Fear bazookas — love that one. And yes, acceptance is a journey and I’m not sure it completely ends in my experience…
A sincere write-up. I'm sure many can relate. It’s important to talk about these things, and I’m glad you opened up about it. I also understand the anger and frustration with the subject matter.
Since you asked, I will chime in with my views and experiences. I understand that our views will differ here, and I offer my opinion, which is just that - an opinion and my personal experience. Nothing more, nothing less.
What is your experience with mind body healing and how have you used it? (Good or bad, all is welcome)
My experience is exceptionally good. I healed my autoimmune disease (Chron’s) that is supposed to be incurable, and modern medicine had zero solutions for me in just two years after suffering for over 15. It took a burnout and a meeting with Mrs. Death to get me there, but I finally did. For those interested, I hope you’ll forgive me, I wrote about it here:
https://zzmeditations.substack.com/p/how-i-healed-my-crohns-disease
I have seen and experienced things that could, if I were the religious type, only be described as miracles. I now understand they are nothing more than a logical consequence of altering the mind, which governs everything. I see patterns connecting everywhere. Once you see it, you can’t unsee it, no matter how much you try.
But you can refrain from telling people what you believe, which is what I do unless someone asks me directly. Sometimes, it would feel cruel, as your post confirmed, and it wouldn't do any good anyway. It is painful to watch people suffer, when you believe you know what is the cause of it, but they just can't accept, see, or do anything about it. There is always the possibility you're completely wrong, of course, so a littel humility never hurts.
Where, in your view, is the line between taking responsibility for your body and self-blame?
Knowing that your mind dictates how your body does everything, the good and the bad) only means that you now see the mechanism at work. There is no intent, harm, blame, or guilt here. Whatever we do to ourselves, we don’t do it intentionally or even consciously. We think, feel, believe, and live as we were taught to. Mostly, we do the best we can and know how to. Altering decades of programming is a Herculean task for any of us. There is no shame in failing, nor in never trying.
Not all want to get better - this is a real phenomenon. I’ve seen a comment asking, “Why in the hell would someone want to be sick or poor,” as an example. The way I understand this, in a very abbreviated form, is that
- We get something from it on a deep, subconscious, emotional level. No, we’re not aware of it, but it’s there. It takes a really deep dive to find these patterns. None of them are logical or correct, nor do they make any rational sense. When I catch mine, I feel like an idiot. Still, they are almost impossible to overcome, as they are a integral part of my worldview.
- Mostly, I believe it’s an identity problem. We identify with our diseases, conditions, and labels (which is why I hate them). They become a part of who we believe we are. People don’t like change. We also don’t like to lose a piece of ourselves. Healing, in a way, is depriving us of something we perceive as who we are, and we will fight it with everything we have until we realize it (often, even after that). I wrote about it here: https://open.substack.com/pub/zzmeditations/p/stop-identifying-labels-youre-not-your-condition?r=1qer9z&utm_campaign=post&utm_medium=web
- Most of us, however, don’t want to be or stay sick. We just entertain thoughts and beliefs that are so engraved in our minds that they almost live on their own. We don’t make the connections and often don’t want to. As you mentioned, it feels better to blame it on someone else, even God, randomness, or some other boogyman, than to accept responsibility ourselves.
Our minds may be at the cause of everything, but I don’t quite get the whole self-blame thing, though. I do get angry at myself for not being able to overcome my mental fallacies and habits (I accept that everything is my fault), so maybe I do. Hm. I react with anger, someone might react in others ways.
I like your awareness of acceptance and surrender. I believe they play a large part in the healing process.
Where is the line between feeling empowered to heal and acceptance of the state of your body?
For me, they are both the same thing. Realizing that my mind controls my body empowers me and gives me hope for eventual change. Acceptance is being okay with where we are in this moment. The two ideas aren’t in conflict. It might be a ballancing act, though.
I found immense peace in accepting that there is a very good chance I’ll forever have to live with severe limitations. I stopped fighting it completely. I stopped giving my condition more energy and attention. I accepted my cross and found a way even to be grateful for it (as in, many have it much worse than me). I adapted my life around it and simply followed the plan I set out (recovery, diet, mental processes, meditations…) without forcing or even wanting to heal. Honestly, at some point, I forgot about it. I focused on my mind and left the results to themselves. When I realized I was healed, it came as a shock to me.
How can we bring more compassion into discussions about chronic illness?
I think the best we can do is let other people live their lives as they see fit. If they don’t want to face their demons, work on their mind, or heal for whatever reason, we let them be. It’s okay.
I wouldn’t dream of enforcing my views on anyone. At best, I offer my perspective and opinion, but I fully realize most people won’t be able or willing even to entertain the idea. And that's okay.
Where someone would see a person who is weak and incompetent (as you alluded to), I see someone who has chosen their path. In most cases, their worldview doesn’t allow for healing by way of changing the mind. Both paths are painful. They chose their pain, in a way. I respect it and try not to judge it.
The reality of the power of our minds is not a pleasant understanding. It doesn’t feel good. It breaks you down, walks all over you, burns you from the inside out, and leaves you dead in a ditch. If you really open yourself up to what it means that your mind controls your body and the whole freaking world around you, you can quickly end up in a dark alley. It takes incredible courage and willingness to entertain some crazy ideas and take full responsibility for everyting.
Besides, it’s entirely possible that in your world, the mind does nothing, and the body is a completely separate entity. We all live in our own worlds. What is true for me may not be true for you. After all, your mind creates the rules of the game. ;)
I do hope you find your way out of your illness. You deserve it. Good luck.
Thank younfor your reflections and for sharing your experience. I am so happy to hear that you have recovered from your autoimmune illness, I find some of the things you say problematic, as you already know. “If they don’t want to face their demons, work on their mind, or heal for whatever reason, we let them be.” And “ It is painful to watch people suffer, when you believe you know what is the cause of it, but they just can't accept, see, or do anything about it.” But I am glad you are open to being wrong. It seems like you equate healing with recovery… I have spent a long time, and still do healing my wounds, inner demons, all of it. It’s my path in life to live from the inside out, but none of it has made a dent in my physical illness. I know plenty of people who walk the same path, who heal their minds/insides, but nothing in their physical bodies change. This doesn’t mean we aren’t healing, aren’t willing to or don’t want to do anything about it. I am glad you seem to have figured out how your world works, but I hope you stay humble by meditating on this sentence: “ There is always the possibility you're completely wrong, of course, so a littel humility never hurts.” Just because something worked for you doesn’t mean it’s a universal truth.
I hope I didn't step on your toes, unintentionaly. I see now I should have worded things differently, as I sound exactly like the "baddies" from your original post. Thank you for understanding that the intention was good, not malevolent.
Don't worry, my moto is and remains: "All I know for certain is that I know nothing!" :)
I’m glad you’re able to see that, and I love your motto! 🌸❤️ No toes stepped on here! I saw no malice in your words.
Eugh, thank you so much for writing this, Madelleine, I really, really needed to hear it.
It’s especially difficult (dangerous, even) when our algorithm can narrow what we see online until it feels like this mind-body healing is everywhere, the answer, like it’s helping everyone else and it’s a personal failing that I can’t seem to think my way out of this.
Want to howl into the night with the frustration of it all. Really helps to have your clarity, thank you x
I’m somglad it resonated and helped, Kate! I sooo understand the whole feeling like it’s a personal failing when you see all these stories online. I’m howling with you 🌸❤️
❤️❤️❤️
Well that little screed has been brewing for awhile. Thank you for the prompt and the place to spew like a rusty tap that has not been turned on in ten years. A weight has shifted. Thank you.
I hear every word. I see you. Acceptance is hard. Chronic illness is a full time job. As much as others might have it worse, you still deserve to have it better. As do they.