Thank you @ChrisGuillebeau for sharing, and thank you to the woman who let you share this. Chronic Fatique is something I battle every day, we are exploring how much of it is related to other things....This post gives me hope.
So not helpful to feature this tale. Downright painful to those of us with actual real chronic fatigue syndrome who can’t wish it away like that, who’ve tried many times to act as if the symptoms are false, with a severe relapse as the result. You are just fueling the popular narrative that CFS is not a real illness.
Hi Pat, thanks for reading and commenting. I think I'll let the story stand on its own (with the appropriate guidance I shared, that it's one person's experience), but I appreciate and respect your experience as well.
I agree with Pat Jeffries to some degree. But CF and other immune disorders can go in and out of remission. I have had cf since 89 and celiac my entire life. I know that the irregularity of those, the difficulty in proving them and the fact that many medical professionals believe they are psychosomatic added to my anxiety over the years about them. So yea...you have to keep trying, keep accepting appointments and invites but also keep flexible for the days you can't fully shower and dress. Every time I think I have it regulated...exercise every other day. Rest 4 hours after. Something happens thats odd either a vacay doesn't set me back OR a 10 minute chair yoga unexpectedly sends pain levels to 12 and puts me to bed!
It's really great to share experiences with CFS, but we need to be careful about how it's a very wide term often used when a medical professional doesn't know how else to explain the fatigue. I understand that there are lots of similar cases, especially amongst athletes who can experience CFS as a result of burn out, treating the condition as a psychosomatic illness has been helpful. I too, was diagnosed with CFS in my early 20s, and over the following 10 years I tried everything, and I mean everything, to recover. From juicing broccoli (gross as it sounds btw) to CBT. There were times I could manage it, and sometimes I couldn't. Then, a year ago, symptoms ramped up again and I started collapsing. After a week in hospital and a year on a waiting list with a cardiologist, it turned out I had been mis-diagnosed. It was real. It's wasn't in my head. It turned out that I have a autonomic nervous system disorder where by my kidneys are over enthusiastic, and strip all the salt out of my system and a super fast rate. The result it that no matter how much water I was drinking, I was permanently de-hydrated which caused my heart to have to work considerably harder to pump rather gloopy blood around my system. This caused an increased heart rate, and the knock on affect was chronic fatigue. But I spent over 10 years feeling like an absolute failure of human being for not being able to beat chronic fatigue by myself.
Yes, the symptoms might be psychosomatic, but sometimes, they are not. It's important that individuals suffering with CFS are not led down a path where they feel their symptoms are in some way in their head. This in it's self can be incredibly damaging to their mental health and confidence. That isn't too say I don't appreciate the importance of the above readers story, but it can be heart breaking to feel that perhaps some way you are causing your own illness, something that I know I suffered with immensely, and the shame and blame I put on myself led me down some difficult paths. I was lucky that I was eventually able to get some answers, but not everyone will be.
Well you just solved part of a myster, I think! My daughter was recently dx with CFS and told me she doesn’t think she has it. What she does have is a congenital heart defect which required surgery at age 2 and resulted in a lifelong faster than normal heart rate. I’m sending her your comment and encouraging her to speak to her cardiologist about this. Thank you for sharing your story!
Thanks for sharing this exchange. I find a ton of value in the nuance of this article, especially around a subject infused with so much shame. (Diseases in which those suffering are often not believed by those around them.) This is one person's very valid experience, which doesn't invalidate the experience of others, or categorically claim anything. I think I generally just deeply appreciate the tone of "Hey here's this thing that happened to me, here's how it was resolved. I'm not going to make any broad conclusions, but I also think it's very worth sharing."
I believe, and your reader’s story confirms this belief, that practicing medicine without the ’psyche’ isn’t practicing medicine at all. Whenever I have anxiety or disruption in my status quo, I immediately have stomach issues. My health coach explained to me that it so because the vagus nerve goes directly to the stomach (and heart). Is there no wonder that our health is intertwined with our emotions? I’ve always known this on a very unconscious level but now I know it consciously and I can manage myself and my health much better. This gave me so much agency to care for myself. In addition, there really is something to the lack of estrogen and women’s health. Please take time to look into that for your readers. Men need to know so they can support the women in their lives.
It seems to me there’s a fine yet very steep line between psychosomatic and well somatic. And I don’t mean that to sound mean or invalidating. I mean that in the way that there’s so much of the body and mind and human functionality that we don’t understand, and so we neither know the cause or how to recover from some illnesses.
For ohhh probably close to a year, I had panic attacks daily. I went to the ER more than once. I would end up in uncontrollable shaking fits. I had to focus on every breath because there was an intense fear that my body would just stop breathing. They came on seemingly out of nowhere - so I didn’t really understand what they were even - and every test came back “nothing is wrong with you.” But there was definitely something wrong, it just wasn’t in an area that could be measured.
So I guess I’m saying this because these stories can sometimes trigger people who have been told for years to get over it, nothing is wrong with you (from experience very frustrating), but I have to assume the majority of people on this newsletter understand that fine, steep line and that very often that line doesn’t really matter much to the experience.
This comments section is exactly what I expected. I completely understand why people think these kids of articles are damaging. Not so long ago I would have said the exact same thing. We live in a society now that has a really, really hard time accepting a narrative that threatens their own. There are many people recovering from chronic illnesses using the strategy explained above (and I'm sure if you got into the nitty-gritty details of it, there was a lot more behind her approach) and many who are not. The scary truth is that medicine does not have all the answers and that humans are not very good at sitting with the uncertainty of not knowing exactly what is going on in their bodies (me included!). These approaches require a HUGE leap of faith and a surrender to whatever will happen, as well as the ability to keep going when things get really terrifying. I think the term 'psychosomatic' confuses people. It doesn't mean that you are purposefully thinking yourself into illness, nor that you can purposefully think your way out of it. It's so much more complicated than that. I do wish people were more open-minded about these approaches, mostly because they have been so life-changing for me (and I've been unwell most of my life) and I think they can really help people. But I also have so much compassion for why people are so sick of having hope.
Several years ago, when it was first diagnosed, I worked with my first CF patient as a body-centered psychotherapist. None of this was "in her head," the exhaustion, etc. was real. She had wanted to be a sports coach, her parents believed any girl who went to college should be an elementary teacher. Once in the classroom, she hated it. By Christmas she was diagnosed with CF, quit teaching and became walker bound within a couple months. After one year and fearing her death, her parents sent her to me. We discussed her dreams, I suggested a part-time volunteer position at a boys & girls club near her house teaching sport to kids. They were all appalled. None the less she did that, within 3 months no walker, 4 months no cane. Eventually she got a full-time job there, got married and had 2 children. Her chronic fatigue of a life and career she hated caused crippling consequences. Coming alive again brought back her life force, her passion, and her joy. No more CFS. Was it "all in her head" no, the physical limitations were real, HOWEVER, the spiritual and emotional stress in following a path that was deadening for her had massive physical impact. Always, we need to look at what is happening at time of physical onset of a disease or disorder. No predisposition ever needs to be actualized. Change the family legacy, their story, and watch the disease disappear.....
The brain is WILDLY powerful in ways I am not sure we understand yet. For example, the kynurenine pathway is one way that we might see stress turn psychosomatic.
Found both this one and Tiago’s article interesting. People generally either hate or love Dr. Sarno. I’m in the latter camp as he always made the important point that the body and the psyche are connected and interact with each other. There’s no “faking” which I see as a binary type of thinking. There’s interaction and becoming more aware of it has been helpful for me personally.
Thank you @ChrisGuillebeau for sharing, and thank you to the woman who let you share this. Chronic Fatique is something I battle every day, we are exploring how much of it is related to other things....This post gives me hope.
100% there is hope for you. Find Nicole Sachs work and podcast. Tons of people have cured themselves from chronic fatigue.
So not helpful to feature this tale. Downright painful to those of us with actual real chronic fatigue syndrome who can’t wish it away like that, who’ve tried many times to act as if the symptoms are false, with a severe relapse as the result. You are just fueling the popular narrative that CFS is not a real illness.
Hi Pat, thanks for reading and commenting. I think I'll let the story stand on its own (with the appropriate guidance I shared, that it's one person's experience), but I appreciate and respect your experience as well.
I agree with Pat Jeffries to some degree. But CF and other immune disorders can go in and out of remission. I have had cf since 89 and celiac my entire life. I know that the irregularity of those, the difficulty in proving them and the fact that many medical professionals believe they are psychosomatic added to my anxiety over the years about them. So yea...you have to keep trying, keep accepting appointments and invites but also keep flexible for the days you can't fully shower and dress. Every time I think I have it regulated...exercise every other day. Rest 4 hours after. Something happens thats odd either a vacay doesn't set me back OR a 10 minute chair yoga unexpectedly sends pain levels to 12 and puts me to bed!
It's really great to share experiences with CFS, but we need to be careful about how it's a very wide term often used when a medical professional doesn't know how else to explain the fatigue. I understand that there are lots of similar cases, especially amongst athletes who can experience CFS as a result of burn out, treating the condition as a psychosomatic illness has been helpful. I too, was diagnosed with CFS in my early 20s, and over the following 10 years I tried everything, and I mean everything, to recover. From juicing broccoli (gross as it sounds btw) to CBT. There were times I could manage it, and sometimes I couldn't. Then, a year ago, symptoms ramped up again and I started collapsing. After a week in hospital and a year on a waiting list with a cardiologist, it turned out I had been mis-diagnosed. It was real. It's wasn't in my head. It turned out that I have a autonomic nervous system disorder where by my kidneys are over enthusiastic, and strip all the salt out of my system and a super fast rate. The result it that no matter how much water I was drinking, I was permanently de-hydrated which caused my heart to have to work considerably harder to pump rather gloopy blood around my system. This caused an increased heart rate, and the knock on affect was chronic fatigue. But I spent over 10 years feeling like an absolute failure of human being for not being able to beat chronic fatigue by myself.
Yes, the symptoms might be psychosomatic, but sometimes, they are not. It's important that individuals suffering with CFS are not led down a path where they feel their symptoms are in some way in their head. This in it's self can be incredibly damaging to their mental health and confidence. That isn't too say I don't appreciate the importance of the above readers story, but it can be heart breaking to feel that perhaps some way you are causing your own illness, something that I know I suffered with immensely, and the shame and blame I put on myself led me down some difficult paths. I was lucky that I was eventually able to get some answers, but not everyone will be.
Well you just solved part of a myster, I think! My daughter was recently dx with CFS and told me she doesn’t think she has it. What she does have is a congenital heart defect which required surgery at age 2 and resulted in a lifelong faster than normal heart rate. I’m sending her your comment and encouraging her to speak to her cardiologist about this. Thank you for sharing your story!
Thanks for sharing this exchange. I find a ton of value in the nuance of this article, especially around a subject infused with so much shame. (Diseases in which those suffering are often not believed by those around them.) This is one person's very valid experience, which doesn't invalidate the experience of others, or categorically claim anything. I think I generally just deeply appreciate the tone of "Hey here's this thing that happened to me, here's how it was resolved. I'm not going to make any broad conclusions, but I also think it's very worth sharing."
I believe, and your reader’s story confirms this belief, that practicing medicine without the ’psyche’ isn’t practicing medicine at all. Whenever I have anxiety or disruption in my status quo, I immediately have stomach issues. My health coach explained to me that it so because the vagus nerve goes directly to the stomach (and heart). Is there no wonder that our health is intertwined with our emotions? I’ve always known this on a very unconscious level but now I know it consciously and I can manage myself and my health much better. This gave me so much agency to care for myself. In addition, there really is something to the lack of estrogen and women’s health. Please take time to look into that for your readers. Men need to know so they can support the women in their lives.
Inaccurately conflates "psychosomatic" illness with "autoimmune" diseases. WRONG. I just Unsubscribed.
It seems to me there’s a fine yet very steep line between psychosomatic and well somatic. And I don’t mean that to sound mean or invalidating. I mean that in the way that there’s so much of the body and mind and human functionality that we don’t understand, and so we neither know the cause or how to recover from some illnesses.
For ohhh probably close to a year, I had panic attacks daily. I went to the ER more than once. I would end up in uncontrollable shaking fits. I had to focus on every breath because there was an intense fear that my body would just stop breathing. They came on seemingly out of nowhere - so I didn’t really understand what they were even - and every test came back “nothing is wrong with you.” But there was definitely something wrong, it just wasn’t in an area that could be measured.
So I guess I’m saying this because these stories can sometimes trigger people who have been told for years to get over it, nothing is wrong with you (from experience very frustrating), but I have to assume the majority of people on this newsletter understand that fine, steep line and that very often that line doesn’t really matter much to the experience.
This comments section is exactly what I expected. I completely understand why people think these kids of articles are damaging. Not so long ago I would have said the exact same thing. We live in a society now that has a really, really hard time accepting a narrative that threatens their own. There are many people recovering from chronic illnesses using the strategy explained above (and I'm sure if you got into the nitty-gritty details of it, there was a lot more behind her approach) and many who are not. The scary truth is that medicine does not have all the answers and that humans are not very good at sitting with the uncertainty of not knowing exactly what is going on in their bodies (me included!). These approaches require a HUGE leap of faith and a surrender to whatever will happen, as well as the ability to keep going when things get really terrifying. I think the term 'psychosomatic' confuses people. It doesn't mean that you are purposefully thinking yourself into illness, nor that you can purposefully think your way out of it. It's so much more complicated than that. I do wish people were more open-minded about these approaches, mostly because they have been so life-changing for me (and I've been unwell most of my life) and I think they can really help people. But I also have so much compassion for why people are so sick of having hope.
This is so interesting. Thank you for sharing
Several years ago, when it was first diagnosed, I worked with my first CF patient as a body-centered psychotherapist. None of this was "in her head," the exhaustion, etc. was real. She had wanted to be a sports coach, her parents believed any girl who went to college should be an elementary teacher. Once in the classroom, she hated it. By Christmas she was diagnosed with CF, quit teaching and became walker bound within a couple months. After one year and fearing her death, her parents sent her to me. We discussed her dreams, I suggested a part-time volunteer position at a boys & girls club near her house teaching sport to kids. They were all appalled. None the less she did that, within 3 months no walker, 4 months no cane. Eventually she got a full-time job there, got married and had 2 children. Her chronic fatigue of a life and career she hated caused crippling consequences. Coming alive again brought back her life force, her passion, and her joy. No more CFS. Was it "all in her head" no, the physical limitations were real, HOWEVER, the spiritual and emotional stress in following a path that was deadening for her had massive physical impact. Always, we need to look at what is happening at time of physical onset of a disease or disorder. No predisposition ever needs to be actualized. Change the family legacy, their story, and watch the disease disappear.....
The brain is WILDLY powerful in ways I am not sure we understand yet. For example, the kynurenine pathway is one way that we might see stress turn psychosomatic.
Found both this one and Tiago’s article interesting. People generally either hate or love Dr. Sarno. I’m in the latter camp as he always made the important point that the body and the psyche are connected and interact with each other. There’s no “faking” which I see as a binary type of thinking. There’s interaction and becoming more aware of it has been helpful for me personally.
Thank you for sharing this reader's story. And also for sharing Tiago's story!
I cured myself of debilitating tendinitis the same way. This shit works. https://open.substack.com/pub/seventysevenzi/p/curing-pain-by-doing-nothing?r=2jtl5&utm_campaign=post&utm_medium=web
This is fascinating, thank you so much to you and your reader for sharing!