Oh wow this makes my blood boil, it’s no coincidence that medical issues affecting women are more often diagnosed as mental health problems. The old fashioned theory of hysteria still ingrained in today’s world.
In my opinion the diagnosis of ‘it’s in your head’ (which I’d like to say the mind is a complex thing and I do believe there are big connections however...) is laziness, pure laziness. None of the descriptions above, or my experiences, have lead to help at all. Be it with my physical symptoms or my supposed psychological issues (I do have psychological issues but most stem from my physical issues).
I had a doctor once tell me I experience pain as I copied my mum (who has a different chronic pain condition) and I experienced more pain because I was a woman. I said, okay, suppose that is the case what can we do about it? Can you refer me to a psychologist? The answer is no, because the pain isn’t from my head. It isn’t from our heads!
Honestly a topic that gets me angry, for me and for you and for all the other people who are the hands of this ignorance.
We are our own best doctors, we know what works and what doesn’t. We know what is healing and what worsens. In all my experiences, and reading yours, we are our own best experts 💚
I am SO sorry about the experience you had in the hospital. It makes me so angry, I know how unbelievably horrible that experience must be for you even to this day. I have definitely had experiences of being told me recurrent utis were in my head! And now I have a chronic uti that has made me house bound for 3 years! If I wasn’t dismissed and treated properly it’s likely I wouldn’t be in this position today. It’s incredibly concerning how quick doctors are to dismiss any health issues and blame it on hysteria. It’s incredibly stressful to be on the receiving end of. I was once told to be braver by a doctor and I ended up flaring for months with the dismissal and accusation I wasn’t being brave and I needed to take my chronic health issues elsewhere.
My friend who also has cUTI recently requested all of her medical notes for something she needed and in that contained all the emails between doctors saying she’s hysterical and making up her utis and seeks attention. She is now bedbound like me. I don’t even remotely want to access and read the emails that are on my notes. That’s a Pandora’s box I’ll leave closed.
The entire worlds approach to chronic conditions it’s disgusting - especially ME/CFS and now LC. My mum had LC (recovered mostly now) and the amount of times she was also told to do the graded exercise to help heal is nuts. So horrified at those cases from Denmark - thank you for sharing & writing this. Xx
I completely agree! While there so much we don’t have (our health) we do have a very understanding community. No matter the illness, every long term sufferer just gets it and that’s always nice to hear 🩵 and definitely helps feel less alone
The past - and present - medical mismanagement of severe ME/CFS makes me so angry. Noone suggests you walk on an a broken leg to make it better.
The latest Finnish study into muscles in Long COVID (& related ME/CFS findings) should help with this for future newly diagnosed people. Its getting a lot of coverage.
Understandably pissed off. Its fascinating where each society draws the lines: inside you’re relatively safe, outside you don’t matter or are legitimate prey. Fascinating if you’re not on the wrong side of that line, infuriating if you are. WTAF.
So sorry that this has been your experience Madelleine. I've been meaning to write a Substack post sharing my own experiences of 'brain retraining'. Long story short: 30 years ME, two of which during moderate stage saw me spend £10k on 'brain retraining' therapy specifically for ME/CFS with a clinical psychologist (who had personal experience of ME or certainly chronic fatigue from severe burn out iirc). The physiological benefit of this therapy never lasted more than two-three days. At one point I was declared 'healed' but I never felt this to be so - not once - and a couple of years later mitochondrial function blood tests definitely proved I was anything but. Leaky membranes being the main issue - likely from long-virus + poor breathing + toxicity. I'm not transferring energy into the cell, dropping protons and electrons. The psychological benefit of the brain training was helpful - we alleviated past trauma and locked in grief and many emotions, which lightened my mental health burden, reduced anxiety massively - but never did this meaningfully improve my underlying physical health. I do believe the brain training was a helpful piece of the jigsaw puzzle that I'd not want to be without in terms of my mental health, but it absolutely hasn't cured my ME.
I’d love to read that post when you’ve written it! I tried somehing akin to brain retraining — more like brain rewiring. It definitely improved my mental health but had no impact whatsoever on my ME. I’m seeing a lot of brain retraining recovery stories around, and I wonder what’s going on… but we don’t hear the stories from those who found it didn’t work.
I too have met people recovered from ME via brain retraining/CBT a la Lightening Process. Not many, just a couple. I also know of others for whom it hasn’t worked; my social media timelines are overwhelmingly represented by these people - mainly moderate and severe, plus some mild. My hunch (I’ve no data) is that the folks who do see benefit from brain training are mainly at the mild end of ME (able to attend the workshops etc.). I speculate that for these people, the relaxation techniques might be enough (likely along with other interventions and changes - people with ME of any severity will typically also be making nutritional changes, supplementing etc.) to tip the nervous and immune systems back into a mode where they can change back towards homeostasis and eventually help heal. I also speculate that these folks didn’t have post-viral-infection or mitochondrial impairment led routes into ME, but had a suppressed energy delivery system through trauma, acute or chronic stress, or severe burn out etc. I would *love* to see evidence of someone having definitively proven ME (any all of: mitochondrial, metabolic, immune, neuro, autonomic impairments, validated by tests) and who has recovered via brain training or CBT only/mainly. I hate to say it, but I don't think that's possible. I would love to be proven wrong. I absolutely hope that one day we have studies decent enough to shed reliable light on who is a good candidate for each and every approach to getting recovered! Meanwhile I try to retain an open mind :)
This is so important to get out there, healing trauma etc is a useful thing to do but it does not cure ME. We can support our bodies with diet, relaxation etc but this does not heal the very real mechanisms going on in our bodies!
It's infuriating. It's humiliating and distressing to have so called medical professionals dismiss obviously physical illness. I've experienced some of the same dismissal. I have fibromyalgia. I'm pleased to say that in the UK the medical profession are acknowledging it's a physical disease rather than a figment of our imagination. Indeed, FM was included as a disability in the Equality Act of 2010(?). Added to the humiliation and anger and distress is the lengths we are put through to receive financial aid. So much is dependent on the assessor. An assessor who can at the stroke of a pen dismiss years of medical history just because they feel like it. My sympathy goes out to you and all who suffer. 💜
Thank you so much, Libby. Fibromyalgia is more ‘accepted’ as a physical disease in Denmark too, although all disabled people have problems with social services, as I hear you too have in the UK.
This was difficult to read. You have suffered so much and continue to do so. Thank you for doing this work to educate others and offer compassion and hope. I agree, there is much ignorance and room for change in the medical community when it comes to ME certainly, and women’s health.
Thank you so much for this! I had a doc who told me it was all psychosomatic - unfortunately I was too weak that day for any discussion. My hubby and I learned from this encounter, that we will only go to a new doc together. And I am gathering print-outs, for when I see a new doc. I even have an ICD-code book, which I will slam on the table the next time and make them search for ME/CFS in it. Oh surprise, it is under neurological disorders! ;-)
Graded exercise does so much harm! At my last GP appointment I was told to join a gym. It is as if doctors are unable to hear what we are saying. This was after I'd said I'm in a flare up and mostly housebound. A previous GP told me they don't believe in ME. It is no wonder we are angry. This illness is so so awful but made more so by the stigma and lack of understanding. I'm so sorry you've had such an awful experience. It is no wonder we avoid medical settings if we can! Xx
Oh wow this makes my blood boil, it’s no coincidence that medical issues affecting women are more often diagnosed as mental health problems. The old fashioned theory of hysteria still ingrained in today’s world.
In my opinion the diagnosis of ‘it’s in your head’ (which I’d like to say the mind is a complex thing and I do believe there are big connections however...) is laziness, pure laziness. None of the descriptions above, or my experiences, have lead to help at all. Be it with my physical symptoms or my supposed psychological issues (I do have psychological issues but most stem from my physical issues).
I had a doctor once tell me I experience pain as I copied my mum (who has a different chronic pain condition) and I experienced more pain because I was a woman. I said, okay, suppose that is the case what can we do about it? Can you refer me to a psychologist? The answer is no, because the pain isn’t from my head. It isn’t from our heads!
Honestly a topic that gets me angry, for me and for you and for all the other people who are the hands of this ignorance.
We are our own best doctors, we know what works and what doesn’t. We know what is healing and what worsens. In all my experiences, and reading yours, we are our own best experts 💚
I agree wth every single word!! And thank you for your anger 🌸🌺
Sending lots of strength your way, because goodness knows we need it when facing these issues! Thank you as always for writing. x
Yes, we all need it! Thank you 🌸💙🩷
💚💚💚
I am SO sorry about the experience you had in the hospital. It makes me so angry, I know how unbelievably horrible that experience must be for you even to this day. I have definitely had experiences of being told me recurrent utis were in my head! And now I have a chronic uti that has made me house bound for 3 years! If I wasn’t dismissed and treated properly it’s likely I wouldn’t be in this position today. It’s incredibly concerning how quick doctors are to dismiss any health issues and blame it on hysteria. It’s incredibly stressful to be on the receiving end of. I was once told to be braver by a doctor and I ended up flaring for months with the dismissal and accusation I wasn’t being brave and I needed to take my chronic health issues elsewhere.
My friend who also has cUTI recently requested all of her medical notes for something she needed and in that contained all the emails between doctors saying she’s hysterical and making up her utis and seeks attention. She is now bedbound like me. I don’t even remotely want to access and read the emails that are on my notes. That’s a Pandora’s box I’ll leave closed.
The entire worlds approach to chronic conditions it’s disgusting - especially ME/CFS and now LC. My mum had LC (recovered mostly now) and the amount of times she was also told to do the graded exercise to help heal is nuts. So horrified at those cases from Denmark - thank you for sharing & writing this. Xx
OMG that is horrible!! Argh! Thank you so much for sharing your stories. While morbid, it helps a lot of people to know they (we) are not alone 🌸
I completely agree! While there so much we don’t have (our health) we do have a very understanding community. No matter the illness, every long term sufferer just gets it and that’s always nice to hear 🩵 and definitely helps feel less alone
Exactly!
The past - and present - medical mismanagement of severe ME/CFS makes me so angry. Noone suggests you walk on an a broken leg to make it better.
The latest Finnish study into muscles in Long COVID (& related ME/CFS findings) should help with this for future newly diagnosed people. Its getting a lot of coverage.
https://www.healthrising.org/blog/2024/01/09/exercisse-muscle-damage-energy-depletion-long-covid/
TL:DR Do not try to exercise your way out of Long COVID unless you want to permanently damage your muscles (and some of your cellular energy cycles)
Thank you for spending precious energy on speaking truth to bullshit.
Thank you Michelle, it’s taken a long time to write... I’m so pissed off that Denmark is still perpetuating this crap.
Understandably pissed off. Its fascinating where each society draws the lines: inside you’re relatively safe, outside you don’t matter or are legitimate prey. Fascinating if you’re not on the wrong side of that line, infuriating if you are. WTAF.
So sorry that this has been your experience Madelleine. I've been meaning to write a Substack post sharing my own experiences of 'brain retraining'. Long story short: 30 years ME, two of which during moderate stage saw me spend £10k on 'brain retraining' therapy specifically for ME/CFS with a clinical psychologist (who had personal experience of ME or certainly chronic fatigue from severe burn out iirc). The physiological benefit of this therapy never lasted more than two-three days. At one point I was declared 'healed' but I never felt this to be so - not once - and a couple of years later mitochondrial function blood tests definitely proved I was anything but. Leaky membranes being the main issue - likely from long-virus + poor breathing + toxicity. I'm not transferring energy into the cell, dropping protons and electrons. The psychological benefit of the brain training was helpful - we alleviated past trauma and locked in grief and many emotions, which lightened my mental health burden, reduced anxiety massively - but never did this meaningfully improve my underlying physical health. I do believe the brain training was a helpful piece of the jigsaw puzzle that I'd not want to be without in terms of my mental health, but it absolutely hasn't cured my ME.
I’d love to read that post when you’ve written it! I tried somehing akin to brain retraining — more like brain rewiring. It definitely improved my mental health but had no impact whatsoever on my ME. I’m seeing a lot of brain retraining recovery stories around, and I wonder what’s going on… but we don’t hear the stories from those who found it didn’t work.
I too have met people recovered from ME via brain retraining/CBT a la Lightening Process. Not many, just a couple. I also know of others for whom it hasn’t worked; my social media timelines are overwhelmingly represented by these people - mainly moderate and severe, plus some mild. My hunch (I’ve no data) is that the folks who do see benefit from brain training are mainly at the mild end of ME (able to attend the workshops etc.). I speculate that for these people, the relaxation techniques might be enough (likely along with other interventions and changes - people with ME of any severity will typically also be making nutritional changes, supplementing etc.) to tip the nervous and immune systems back into a mode where they can change back towards homeostasis and eventually help heal. I also speculate that these folks didn’t have post-viral-infection or mitochondrial impairment led routes into ME, but had a suppressed energy delivery system through trauma, acute or chronic stress, or severe burn out etc. I would *love* to see evidence of someone having definitively proven ME (any all of: mitochondrial, metabolic, immune, neuro, autonomic impairments, validated by tests) and who has recovered via brain training or CBT only/mainly. I hate to say it, but I don't think that's possible. I would love to be proven wrong. I absolutely hope that one day we have studies decent enough to shed reliable light on who is a good candidate for each and every approach to getting recovered! Meanwhile I try to retain an open mind :)
Yeah I agree with you here. And we desperately need proper diagnostic tests!
This is so important to get out there, healing trauma etc is a useful thing to do but it does not cure ME. We can support our bodies with diet, relaxation etc but this does not heal the very real mechanisms going on in our bodies!
Exactly!
It's infuriating. It's humiliating and distressing to have so called medical professionals dismiss obviously physical illness. I've experienced some of the same dismissal. I have fibromyalgia. I'm pleased to say that in the UK the medical profession are acknowledging it's a physical disease rather than a figment of our imagination. Indeed, FM was included as a disability in the Equality Act of 2010(?). Added to the humiliation and anger and distress is the lengths we are put through to receive financial aid. So much is dependent on the assessor. An assessor who can at the stroke of a pen dismiss years of medical history just because they feel like it. My sympathy goes out to you and all who suffer. 💜
Thank you so much, Libby. Fibromyalgia is more ‘accepted’ as a physical disease in Denmark too, although all disabled people have problems with social services, as I hear you too have in the UK.
This was difficult to read. You have suffered so much and continue to do so. Thank you for doing this work to educate others and offer compassion and hope. I agree, there is much ignorance and room for change in the medical community when it comes to ME certainly, and women’s health.
Thank you for being a witness, Sabine 🌸✨
Thank you so much for this! I had a doc who told me it was all psychosomatic - unfortunately I was too weak that day for any discussion. My hubby and I learned from this encounter, that we will only go to a new doc together. And I am gathering print-outs, for when I see a new doc. I even have an ICD-code book, which I will slam on the table the next time and make them search for ME/CFS in it. Oh surprise, it is under neurological disorders! ;-)
Aargh that’s infuriating, and especially when too weak to say anything. So sorry you had to go through this 🌸 Good idea with bringing docs etc.!
Thank you. 💕 And in case the doc is really nasty, I can throw the ICD code book at them - it is huge! 😂
OMG that’s my new fantasy!! I have plenty doctors I would love to throw the ICD code book at 😂
😂😂😂 We surely have fun fantasies!
😂😂
Graded exercise does so much harm! At my last GP appointment I was told to join a gym. It is as if doctors are unable to hear what we are saying. This was after I'd said I'm in a flare up and mostly housebound. A previous GP told me they don't believe in ME. It is no wonder we are angry. This illness is so so awful but made more so by the stigma and lack of understanding. I'm so sorry you've had such an awful experience. It is no wonder we avoid medical settings if we can! Xx
Aargh it’s soo infuriating!