Good and justified rant. WTAF. Especially when considered with the obdurate lack of research funding for many of these same diseases. There’s a trend there, for sure, and it smells like ‘accidentally on purpose’.
The one thing I can say about this issue, is that treatment of women and their health issues has actually improved since I was a young woman, and a mother. I'm 66 now and I have seen vast improvements over the decades. We still can do better. Absolutely. I'm working on a piece about two missed diagnoses that I had research to figure out what the problem was and then advocate for the right care.
I very much believe that is has improved significantly, and I think that is something worth remembering and celebrating. I do think within the realm of fatigue or energy-limiting conditions, it's still quite bad, because they still follow the legacy of conditions blamed on women's neuroses (hysteria, originally, and later somatoform disorders and many other iterations). On the flips side, some conditions that affect mostly women, like migraine, have beet more or less pulled out of the bucket of "it's in your head," and have more consistent diagnosis and treatment now.
I'm looking forward to reading your piece--I think that's a common story, particularly for chronically ill people, even today!
I had 3 older sisters, and all of my first cousins are much older than me, so I have a lot of first hand knowledge within my family of women's health issues including neuroses diagnoses. Fibromyalgia runs in my family. I was first diagnosed with CFS in the mid-80's and did not get a solid Fibro diagnosis until the pandemic when I spent a lot less time out and about. Thankfully with my CFS history and a round of Immune Disorder tests my doctors decided I did indeed have Fibro.
One thing I notice is a lot of my friends don't understand Fibro and I get little empathy for it. That surprises me.
I too began to question my own sanity when reading this article. A global market report for women's blah, blah, blah makes me incredulous, disgusted, and like burying my head in the sand because it's so nuts.
Thank you for the research summary, appreciate you doing that work for us. As a health care provider, reading things like this makes me sit up and notice. I recommit to increasing my listening skills and hope no one ever leaves my office feeling unheard.
I’m so glad you find this useful, and thanks for letting me know because it helps me figure out the direction here! Thanks for being so conscious of the issues as a healthcare provider.
It's extremely disheartening to see reports like this. I've always been concerned that the lack of trust creates a space for grifters to occupy. Where people aren't feeling seen or believed by the professionals that are supposed to be there for them, there are malicious people that seek to offer solutions. And it doesn't matter that these solutions aren't evidence based, because what the person is seeking is understanding. It's saddening.
Definitely. It’s very hard to navigate the alternatives because there’s such a massive range from scammers to legit evidence based approaches that haven’t made their way into mainstream medicine.
Yeah, and iirc the research-practice gap is approximately 17 years. That was wild for me to read. It feels like it takes a long time for things to become the new “meta” especially in healthcare because dogma is so entrenched.
Thank you so much for sharing this report. I feel so seen that I could cry a little. I have an ELC but this is the first time I’ve heard this term. Language is so important in having one’s experience understood, and the lack therefore plays a role in feeding stigma and disbelief. I’m recovering from ME/CFS and find that ‘fatigue’ and ‘tiredness’ are problematic terms, as they are understood as a universal experience (“oh yeah I’m tired too” is all too common a response) that is cured by sleep.
Absolutely, language is so important! I'm glad this resonated with you so deeply. I personally thought the work with artists and the resulting images, though sometimes a little silly, made a big difference. It's really hard to describe a cycle of fatigue and demoralization, and an image can help tell the story more clearly. I was glad to find those.
Agreed, that image tells a complex story of marginalisation so elegantly. An infographic tells 1000 words - an adage for the 21st century? It reminded me how dark the time pre-diagnosis was (a woman with a chronic illness and without a diagnosis is one descending quickly into insanity, in my experience) and it got me thinking as to how much we depend on that label to communicate and validate our experience. I’d love for society to move beyond needing external validation for our individual needs and limitations, but while that’s the case, widely understood labels that we can take shelter under are critical.
I loved that cycle image but I also feel like I’m in all those places at once. I’ve also been wondering when a doctor will not only believe me and provide me proper testing but also give me a prescription to go to the ocean for some fresh air alone, Victorian style.
Yes amen! I actually read awhile back that the national health service in Japan does prescribe trips to the forest. They are way ahead of us here, due to cultural practice of "forest bathing" and the general understanding that time in the forest affects health positively. I need to look into that again...it's so cool and forward thinking.
As a person living with severe ME I can personally attest how serious the consequences are of not being believed (also known as medical gaslighting). I’ve spent years working on overcomimg and healing this trauma and it’s still an issue for me. Thank you, Rae, for writing about this issue. If you ever want to interview someone who has lived this let me know.
Ugh I'm so sorry to hear about your experiences with this...it is so common and so damaging. I hope that through people like us talking about it as well as more research like this report we can get some change...though it will doubtlessly be slow and a lot of damage will continue to be done in the meantime.
WTAF. Thank you so much for doing this research. And highlighting what you are. I thought nothing surprised me anymore. I’m in shock. How much of these astronomical sums of money being spent is leading women on to heal themselves? As opposed to the manage and control approach I wonder.
Excellent! I have one child who seems to be distinctively not an HSP so far, which is cool (cool either way!). But it means I haven't looked so much into parenting HSPs, which I can imagine is fascinating. I have another baby on the way, and we'll see how she comes into the world...
Ooh, thanks, I’m going to read this. Fellow HSP here 🙋🏻♀️(who only quite recently has this language for it). I’m Excited to research and understand more about HSPs. It’s such a relief to have language for it and meet others who identify :)
Isn't it crazy to learn about it? I'm not sure how old you are, but I didn't get the language until my early thirties. I was totally blown away. I read the list of HSP traits with such recognition, like, AH HAH THIS EXPLAINS SO MUCH.
I validate the feelings of my female patients all the time. I say “If you feel the medical system is not working for you, it’s because it wasn’t built for us. Only 50 years ago, your husband could give consent for your mastectomy and not tell you whether you had cancer.”
You should read about why the AMA was founded...chilling.
Good and justified rant. WTAF. Especially when considered with the obdurate lack of research funding for many of these same diseases. There’s a trend there, for sure, and it smells like ‘accidentally on purpose’.
Yes DEFINITELY "accidentally on purpose," well put. Thank you for co-ranting.
The one thing I can say about this issue, is that treatment of women and their health issues has actually improved since I was a young woman, and a mother. I'm 66 now and I have seen vast improvements over the decades. We still can do better. Absolutely. I'm working on a piece about two missed diagnoses that I had research to figure out what the problem was and then advocate for the right care.
I very much believe that is has improved significantly, and I think that is something worth remembering and celebrating. I do think within the realm of fatigue or energy-limiting conditions, it's still quite bad, because they still follow the legacy of conditions blamed on women's neuroses (hysteria, originally, and later somatoform disorders and many other iterations). On the flips side, some conditions that affect mostly women, like migraine, have beet more or less pulled out of the bucket of "it's in your head," and have more consistent diagnosis and treatment now.
I'm looking forward to reading your piece--I think that's a common story, particularly for chronically ill people, even today!
I had 3 older sisters, and all of my first cousins are much older than me, so I have a lot of first hand knowledge within my family of women's health issues including neuroses diagnoses. Fibromyalgia runs in my family. I was first diagnosed with CFS in the mid-80's and did not get a solid Fibro diagnosis until the pandemic when I spent a lot less time out and about. Thankfully with my CFS history and a round of Immune Disorder tests my doctors decided I did indeed have Fibro.
One thing I notice is a lot of my friends don't understand Fibro and I get little empathy for it. That surprises me.
This is what we've come to? I have thoughts, which I might share once I channel some of this Sacred Rage!
Yes I like that word "sacred" here! Sacred Rage! I'm going to use that!
I too began to question my own sanity when reading this article. A global market report for women's blah, blah, blah makes me incredulous, disgusted, and like burying my head in the sand because it's so nuts.
Thank you for the research summary, appreciate you doing that work for us. As a health care provider, reading things like this makes me sit up and notice. I recommit to increasing my listening skills and hope no one ever leaves my office feeling unheard.
I’m so glad you find this useful, and thanks for letting me know because it helps me figure out the direction here! Thanks for being so conscious of the issues as a healthcare provider.
It's extremely disheartening to see reports like this. I've always been concerned that the lack of trust creates a space for grifters to occupy. Where people aren't feeling seen or believed by the professionals that are supposed to be there for them, there are malicious people that seek to offer solutions. And it doesn't matter that these solutions aren't evidence based, because what the person is seeking is understanding. It's saddening.
Definitely. It’s very hard to navigate the alternatives because there’s such a massive range from scammers to legit evidence based approaches that haven’t made their way into mainstream medicine.
Yeah, and iirc the research-practice gap is approximately 17 years. That was wild for me to read. It feels like it takes a long time for things to become the new “meta” especially in healthcare because dogma is so entrenched.
Thank you so much for sharing this report. I feel so seen that I could cry a little. I have an ELC but this is the first time I’ve heard this term. Language is so important in having one’s experience understood, and the lack therefore plays a role in feeding stigma and disbelief. I’m recovering from ME/CFS and find that ‘fatigue’ and ‘tiredness’ are problematic terms, as they are understood as a universal experience (“oh yeah I’m tired too” is all too common a response) that is cured by sleep.
Absolutely, language is so important! I'm glad this resonated with you so deeply. I personally thought the work with artists and the resulting images, though sometimes a little silly, made a big difference. It's really hard to describe a cycle of fatigue and demoralization, and an image can help tell the story more clearly. I was glad to find those.
Agreed, that image tells a complex story of marginalisation so elegantly. An infographic tells 1000 words - an adage for the 21st century? It reminded me how dark the time pre-diagnosis was (a woman with a chronic illness and without a diagnosis is one descending quickly into insanity, in my experience) and it got me thinking as to how much we depend on that label to communicate and validate our experience. I’d love for society to move beyond needing external validation for our individual needs and limitations, but while that’s the case, widely understood labels that we can take shelter under are critical.
Love this comment; I totally agree with all of this. It’s a language-limiting condition, too!
I loved that cycle image but I also feel like I’m in all those places at once. I’ve also been wondering when a doctor will not only believe me and provide me proper testing but also give me a prescription to go to the ocean for some fresh air alone, Victorian style.
Yes amen! I actually read awhile back that the national health service in Japan does prescribe trips to the forest. They are way ahead of us here, due to cultural practice of "forest bathing" and the general understanding that time in the forest affects health positively. I need to look into that again...it's so cool and forward thinking.
More prescriptions for sea air and convalescence please!
As a person living with severe ME I can personally attest how serious the consequences are of not being believed (also known as medical gaslighting). I’ve spent years working on overcomimg and healing this trauma and it’s still an issue for me. Thank you, Rae, for writing about this issue. If you ever want to interview someone who has lived this let me know.
Ugh I'm so sorry to hear about your experiences with this...it is so common and so damaging. I hope that through people like us talking about it as well as more research like this report we can get some change...though it will doubtlessly be slow and a lot of damage will continue to be done in the meantime.
WTAF. Thank you so much for doing this research. And highlighting what you are. I thought nothing surprised me anymore. I’m in shock. How much of these astronomical sums of money being spent is leading women on to heal themselves? As opposed to the manage and control approach I wonder.
Haha yes, I so often have this feeling of, "I thought nothing surprised me anymore, and yet I'm still surprised." UGH!
Hello, dear fellow HSP! I love your writing, thank you 🙏
Hello! 👋 Thanks for the kind note 😊
❤️
Have you read the Elaine Aron books on HSPs?
Yes! She's the OG for sure. I've read "The Highly Sensitive Person." Any others you'd recommend from her? <3
Yes! That’s the HSP Bible. The Highly sensitive child is good for perspective! ...and for those with kids of course.
Excellent! I have one child who seems to be distinctively not an HSP so far, which is cool (cool either way!). But it means I haven't looked so much into parenting HSPs, which I can imagine is fascinating. I have another baby on the way, and we'll see how she comes into the world...
Ooh, thanks, I’m going to read this. Fellow HSP here 🙋🏻♀️(who only quite recently has this language for it). I’m Excited to research and understand more about HSPs. It’s such a relief to have language for it and meet others who identify :)
Isn't it crazy to learn about it? I'm not sure how old you are, but I didn't get the language until my early thirties. I was totally blown away. I read the list of HSP traits with such recognition, like, AH HAH THIS EXPLAINS SO MUCH.
https://www.theguardian.com/society/2023/sep/26/feminist-approach-cancer-save-lives-800000-women
This just showed up.
I validate the feelings of my female patients all the time. I say “If you feel the medical system is not working for you, it’s because it wasn’t built for us. Only 50 years ago, your husband could give consent for your mastectomy and not tell you whether you had cancer.”
You should read about why the AMA was founded...chilling.
Great piece. Great conversation.
"Only 50 years ago, your husband could give consent for your mastectomy and not tell you whether you had cancer.”
I just published my own article on gender bias in healthcare, but little facts like these still make my skin crawl.
PREACH GIRL PREACH