Thank you for this post. I developed two chronic illnesses - fibromyalgia and ME/CFS - during my marriage due to stress and abuse. They misdiagnosed me with rheumatoid arthritis for years, and one male rheumatologist dismissed so many of my concerns. I told him that taking prednisone made me feel awful - what did he do? Prescribed me more! I didn't take it. I also remember going to see a male urologist who said I had a bladder infection and prescribed me antibiotics - which I did not. His female nurse told me he did it all the time. Finally, a wonderful female doctor at the Mayo Clinic diagnosed me with ME/CFS. I felt seen and validated. But now I have to live with these two illnesses, neither of which have cures, but just must be managed. It's disheartening. I'm looking forward to connecting with other women on Substack dealing with chronic health issues.
Thank you so much for sharing your story, Melissa. I'm sorry that you have developed these illnesses. And so sorry that you had such a terrible marriage and such awful treatment from health care professionals.
I wonder if, sometimes, the validation is really important for some of us? Of course, we would rather not be ill and would rather have something treatable if we are ill. But if we are ill, and there is no cure for the condition, validation that someone else sees and acknowledges our suffering goes a long way, I think.
There are so many of us here, Melissa. I think we should be able to do *something* to help and support and encourage each other. I'm thinking about what and how!
I agree with you, Emma! Validation is so very important. I can't tell you what it meant to finally have a diagnosis from my doctor at the Mayo Clinic and for her to actually LISTEN to me.
A day late but for good reason! A wonderfully written piece and one that also resonated with me. I am grateful everyday for the NHS but that doesn’t mean that the system is perfect. In my late 30s and early 40s I went to the GP a number of times with what I now truly believe were perimenopausal symptoms and was told I was too young and fobbed off. So much so that almost 10 years on I have not returned for advice or help out of fear of being ignored and feeling like a time-waster again. Thank you for sharing your story.
Thank you for commenting Barbara. And thank you so much for sharing your story too. I agree. I am so grateful for the NHS and I know that most health care professionals are good people who are working incredibly hard.
I'm sorry that you got fobbed off by GPs when you went to them with perimenopausal symptoms. You weren't in any way too young in your late 30s and early 40s to be perimenopausal! If menopause is, on average, aged 51 in the UK, and perimenopause lasts for, on average, 10 years before that, then any time in your 40s is completely normal and average! (And, of course, that is only the average.)
The way this treatment affects people and prevents them returning for advice and help really worries me. I feel the same. And when I feel I *do* need to speak to a doctor I am so anxious and desperate to explain myself to them that I just sound unhinged, I fear!
Oh I have so much I want to say in response to this! I’ve been loaned a copy of this book and preparing myself for the anger that will rise as I read every page. I’ve only seen the statement in the middle on the photographs of the woman who proved periods weren’t an illness or disability. Only for us to have gone and done what? Medicalised them and turned them into illness and disability!🤬🤯
I’ve spent the last few years writing books I’m still yet to publish alongside sharing my story because I strongly believe this is the fastest way to bring about the change we so desperately need.
I do feel it will benefit us to understand the purpose of the medical system, its strengths and limitations. As hard as it is to bare because of all the conditioning, it is not feasible to place the responsibility solely on one system or organisation. Particularly one that was never set up with the systems and needs our body in mind in the first place.
The element of blame requires a cultural shift and isn’t limited to the medical field. “Where there’s blame there’s a claim” and all that. It’s time to reclaim ourselves and realise that we don’t have to be beholden to that which does not serve us.
Thank you for commenting Amber. And yes, I think anger is my main response to this book. A galvanising anger, actually. I still have a LOT I want to say about this book.
"I do feel it will benefit us to understand the purpose of the medical system, its strengths and limitations." I agree with this. I think it is important to have a nuanced conversation about this. There is so much of good in the medical system, and many, many good people, who save and improve people's lives every day, often in challenging environments. Many of them are friends of mine and former colleagues.
But that doesn't detract from the very real harm that also happens within the medical system, or the lack of care. Much of it arises from fear of making a mistake or getting something wrong, which is completely understandable. Most of it is systemic and isn't going to change overnight.
Ugh this is both so familiar and infuriating. I'm 'lucky' in that it 'only' took me a year to get diagnosed with EDS. I was actually lucky that my medical providers believed me, and it was pretty hard to explain away the extreme hypermobility in my body. All of my doctors at the time were women, so I'm not sure if that helped or not.
It was only when I was 30 that I realized that a 0 on the pain scale was possible. My joints ache constantly and I just figured that was normal. Realizing that it *wasn't* was a huge paradigm shift for me.
Lots of hugs to you as you navigate with the stupid allergies, from a fellow hay-fever sufferer.
Thank you for your comment Marissa. And I'm sorry to hear you are in constant pain. Pain is so exhausting to deal with.
And thank you for explaining how you came to that paradigm shift. I think I need this! I've lived with constant pain for so long that conscious self is just accepting it, I think. But I suspect that trying to ignore the pain is causing me to be incredibly tense, which is... unhelpful. I've found actually focusing on my pain (for brief periods) surprisingly useful in dealing with it! (I realise that wouldn't work for everyone.)
I'm going to think about the possibility of a 0 on the pain scale this week. It blows my mind that there are people out there for whom this is the case?!
I learned about that from a friend who sent me a pain chart and then joked about how 0 was an option and I was like wait a minute…it is?!?! Mind blowing.
At this point I’ve leaned into comfy cozy, meaning I keep buying things that I know will make me comfortable: compression socks, a knee brace, strength bands, a mat for my standing desk, etc. I’m not sure I’ve fully accepted my body’s limitations (and Lord knows I pushed through them A LOT when I was a teen) but I’m at least acknowledging that I might need different tools to function.
That acknowledgement feels like an important step. I am such a slow learner! I have been dealing with physical health problems since I was eighteen, on and off, and I still don't really have a good grasp on how to handle these limitations well.
I thought that my need for comfort was all about craving physical comfort to sooth my emotional pain, but... physical comfort when you are in so much bodily pain also really matters! Thank you for helping me realise this!
I've been meaning to read this book too. I know I will find it deeply interesting, it's a topic very close to my heart too. But as soon as I go to pick it up I can feel a weight on me and I get a bit overwhelmed with sadness. I hate that so many of us have to go through these experiences. I'm so sorry you did (do) too. Especially because it puts you off for future care that you are entitled to. It feels like we have to arm ourselves for battle each time we enter the medical realm. I really do believe that by sharing our stories we can 'fight' back in our own way. We should never forget the power of our voices, especially together. Thanks for sharing your story with us 💕
Thank you for your comment, Amanda. I can definitely understand feeling overwhelmed with sadness at this subject. I think it is always worth listening to your instincts on when it is the right time to read a book. When you are ready to read this one, it might help to know that I found it inspiring and galvanising as well as upsetting.
Oh, yes. I should have made that clearer in my post. This isn't men, this is society. Including me. Not believing women's pain is something that most of us do, sadly.
I had a visit to the Emergency Room last week for a ‘head strike’. After a few hours of lying still on a trolley I was about to be thoroughly examined and possibly scanned when the doctor asked about any other medical conditions. Once ‘fibromyalgia’ came up he did a quick feel of my neck and I was told they’d give me paracetamol (tylenol) for the headache and as long as I could walk enough to prepare food for myself, I could go home. Maybe that’s what would have happened anyway, but there was a noticeable decline in interest.
Oh no, Michelle? I'm sorry that that happened to you. There were so many things I wanted to write about when I started this post, and I couldn't include them all, but the way that any previous physical or mental health diagnosis can prevent new symptoms or conditions being properly investigated is another worry for chronically ill women. Diagnostic overshadow, I believe it is called.
Invisible Women was an equally entrancing and infuriating book! I borrowed it from the library, so frustratingly didn't have it to hand when I was writing this post.
Thank you for this post. I developed two chronic illnesses - fibromyalgia and ME/CFS - during my marriage due to stress and abuse. They misdiagnosed me with rheumatoid arthritis for years, and one male rheumatologist dismissed so many of my concerns. I told him that taking prednisone made me feel awful - what did he do? Prescribed me more! I didn't take it. I also remember going to see a male urologist who said I had a bladder infection and prescribed me antibiotics - which I did not. His female nurse told me he did it all the time. Finally, a wonderful female doctor at the Mayo Clinic diagnosed me with ME/CFS. I felt seen and validated. But now I have to live with these two illnesses, neither of which have cures, but just must be managed. It's disheartening. I'm looking forward to connecting with other women on Substack dealing with chronic health issues.
Thank you so much for sharing your story, Melissa. I'm sorry that you have developed these illnesses. And so sorry that you had such a terrible marriage and such awful treatment from health care professionals.
I wonder if, sometimes, the validation is really important for some of us? Of course, we would rather not be ill and would rather have something treatable if we are ill. But if we are ill, and there is no cure for the condition, validation that someone else sees and acknowledges our suffering goes a long way, I think.
There are so many of us here, Melissa. I think we should be able to do *something* to help and support and encourage each other. I'm thinking about what and how!
I agree with you, Emma! Validation is so very important. I can't tell you what it meant to finally have a diagnosis from my doctor at the Mayo Clinic and for her to actually LISTEN to me.
A day late but for good reason! A wonderfully written piece and one that also resonated with me. I am grateful everyday for the NHS but that doesn’t mean that the system is perfect. In my late 30s and early 40s I went to the GP a number of times with what I now truly believe were perimenopausal symptoms and was told I was too young and fobbed off. So much so that almost 10 years on I have not returned for advice or help out of fear of being ignored and feeling like a time-waster again. Thank you for sharing your story.
Thank you for commenting Barbara. And thank you so much for sharing your story too. I agree. I am so grateful for the NHS and I know that most health care professionals are good people who are working incredibly hard.
I'm sorry that you got fobbed off by GPs when you went to them with perimenopausal symptoms. You weren't in any way too young in your late 30s and early 40s to be perimenopausal! If menopause is, on average, aged 51 in the UK, and perimenopause lasts for, on average, 10 years before that, then any time in your 40s is completely normal and average! (And, of course, that is only the average.)
The way this treatment affects people and prevents them returning for advice and help really worries me. I feel the same. And when I feel I *do* need to speak to a doctor I am so anxious and desperate to explain myself to them that I just sound unhinged, I fear!
Oh I have so much I want to say in response to this! I’ve been loaned a copy of this book and preparing myself for the anger that will rise as I read every page. I’ve only seen the statement in the middle on the photographs of the woman who proved periods weren’t an illness or disability. Only for us to have gone and done what? Medicalised them and turned them into illness and disability!🤬🤯
I’ve spent the last few years writing books I’m still yet to publish alongside sharing my story because I strongly believe this is the fastest way to bring about the change we so desperately need.
I do feel it will benefit us to understand the purpose of the medical system, its strengths and limitations. As hard as it is to bare because of all the conditioning, it is not feasible to place the responsibility solely on one system or organisation. Particularly one that was never set up with the systems and needs our body in mind in the first place.
The element of blame requires a cultural shift and isn’t limited to the medical field. “Where there’s blame there’s a claim” and all that. It’s time to reclaim ourselves and realise that we don’t have to be beholden to that which does not serve us.
Thank you for commenting Amber. And yes, I think anger is my main response to this book. A galvanising anger, actually. I still have a LOT I want to say about this book.
"I do feel it will benefit us to understand the purpose of the medical system, its strengths and limitations." I agree with this. I think it is important to have a nuanced conversation about this. There is so much of good in the medical system, and many, many good people, who save and improve people's lives every day, often in challenging environments. Many of them are friends of mine and former colleagues.
But that doesn't detract from the very real harm that also happens within the medical system, or the lack of care. Much of it arises from fear of making a mistake or getting something wrong, which is completely understandable. Most of it is systemic and isn't going to change overnight.
Ugh this is both so familiar and infuriating. I'm 'lucky' in that it 'only' took me a year to get diagnosed with EDS. I was actually lucky that my medical providers believed me, and it was pretty hard to explain away the extreme hypermobility in my body. All of my doctors at the time were women, so I'm not sure if that helped or not.
It was only when I was 30 that I realized that a 0 on the pain scale was possible. My joints ache constantly and I just figured that was normal. Realizing that it *wasn't* was a huge paradigm shift for me.
Lots of hugs to you as you navigate with the stupid allergies, from a fellow hay-fever sufferer.
Thank you for your comment Marissa. And I'm sorry to hear you are in constant pain. Pain is so exhausting to deal with.
And thank you for explaining how you came to that paradigm shift. I think I need this! I've lived with constant pain for so long that conscious self is just accepting it, I think. But I suspect that trying to ignore the pain is causing me to be incredibly tense, which is... unhelpful. I've found actually focusing on my pain (for brief periods) surprisingly useful in dealing with it! (I realise that wouldn't work for everyone.)
I'm going to think about the possibility of a 0 on the pain scale this week. It blows my mind that there are people out there for whom this is the case?!
I learned about that from a friend who sent me a pain chart and then joked about how 0 was an option and I was like wait a minute…it is?!?! Mind blowing.
At this point I’ve leaned into comfy cozy, meaning I keep buying things that I know will make me comfortable: compression socks, a knee brace, strength bands, a mat for my standing desk, etc. I’m not sure I’ve fully accepted my body’s limitations (and Lord knows I pushed through them A LOT when I was a teen) but I’m at least acknowledging that I might need different tools to function.
That acknowledgement feels like an important step. I am such a slow learner! I have been dealing with physical health problems since I was eighteen, on and off, and I still don't really have a good grasp on how to handle these limitations well.
Your comment about leaning into 'comfy cozy' has made me realise that this is probably a big part of why I crave comfort so much. (Here is the link to the post I wrote about it, for anyone reading these comments who hasn't seen that post: https://open.substack.com/pub/wonderingsteps/p/friday-31st-may-2024?r=3wo9c1&utm_campaign=post&utm_medium=web )
I thought that my need for comfort was all about craving physical comfort to sooth my emotional pain, but... physical comfort when you are in so much bodily pain also really matters! Thank you for helping me realise this!
I've been meaning to read this book too. I know I will find it deeply interesting, it's a topic very close to my heart too. But as soon as I go to pick it up I can feel a weight on me and I get a bit overwhelmed with sadness. I hate that so many of us have to go through these experiences. I'm so sorry you did (do) too. Especially because it puts you off for future care that you are entitled to. It feels like we have to arm ourselves for battle each time we enter the medical realm. I really do believe that by sharing our stories we can 'fight' back in our own way. We should never forget the power of our voices, especially together. Thanks for sharing your story with us 💕
Thank you for your comment, Amanda. I can definitely understand feeling overwhelmed with sadness at this subject. I think it is always worth listening to your instincts on when it is the right time to read a book. When you are ready to read this one, it might help to know that I found it inspiring and galvanising as well as upsetting.
It's not just male Dr's, I remember taking you to a female Dr with bad period pains and her saying it's something you have to put up with.
Oh, yes. I should have made that clearer in my post. This isn't men, this is society. Including me. Not believing women's pain is something that most of us do, sadly.
Hope youre enjoying the horse riding 🙄 like I'm enjoying the gym my doctor suggested 🙄
My (male) rheumatologist refused to prescribe me medication for my pain and said I should try "yoga and meditation instead." Utterly clueless.
Wow. Ugh - I'm sorry.
Thank you. I 'fired' him.
Yes absolutely no idea!!x
Excellent post Emma! All so true!! x
I had a visit to the Emergency Room last week for a ‘head strike’. After a few hours of lying still on a trolley I was about to be thoroughly examined and possibly scanned when the doctor asked about any other medical conditions. Once ‘fibromyalgia’ came up he did a quick feel of my neck and I was told they’d give me paracetamol (tylenol) for the headache and as long as I could walk enough to prepare food for myself, I could go home. Maybe that’s what would have happened anyway, but there was a noticeable decline in interest.
Oh no, Michelle? I'm sorry that that happened to you. There were so many things I wanted to write about when I started this post, and I couldn't include them all, but the way that any previous physical or mental health diagnosis can prevent new symptoms or conditions being properly investigated is another worry for chronically ill women. Diagnostic overshadow, I believe it is called.
I hope you are recovering well?
Thanks for sharing your thoughts on and experiences of this, Emma. That sounds a really interesting book. I’ll add it to my kindle, if it’s available.
It is such an interesting book, Wendy. And yes, it is available on Kindle and is, I believe, only £2.99 today!
Ooh, definitely, then! Sounds fascinating.
I’m a fan of Caroline Criado Perez already, who you also mentioned - she’s done so much to highlight health inequalities.
Invisible Women was an equally entrancing and infuriating book! I borrowed it from the library, so frustratingly didn't have it to hand when I was writing this post.