A story of medical gaslighting, negligence and neglect that very nearly cost me my life - and how my accidental advocate (untrained and unprepared) saved me.
WOW…this is ENRAGING. You quite literally were left for dead by the very people responsible for keeping you alive. The hubris that exists in medicine is out of control. So much gatekeeping and people’s lives are on the line.
Thank you for sharing this. Would it be okay if I shared this post in my next roundup post? More people should read stories like yours.
Ansolutely! I would be honoured (and thank you for asking). I feel so strange right now because I’m proud I put my story out there - but I also feel raw and vulnerable that it’s out there. I genuinely hope it helps others … because we are dismissed far too easily and disbelieved when we share our stories.
Also I know we’ve talked about MCAS before - but it’s highly likely it played a role too. MCAS can cause your body to secrete heparin and complicate bleeding issues. A real mess if you also have vEDS (or any EDS really).
You’re welcome! I find people often think of MCAS just in terms of histamine - when in reality the mast cells secrete so much more than that! Heparin and prostaglandin are big issues for me.
I was wondering how you were feeling after sharing a story of this magnitude. This does shine a light on the systemic issues that are so prevalent within our healthcare. It’s a devastating youth you have experienced in so many ways. With little to no care and support. Only a myriad of complications to add to the load.
It’s really fascinating the toll sharing something like this can take. In some ways it’s cathartic and I’m really happy it’s out there and will hopefully help other people - but reliving it and putting it all down on the page was hard work. There’s still a lot of unresolved trauma to work through.
There’s no doubt this will help others. It’s helped me get to know you more too and understand more deeply about why you’re sharing what you’re sharing.
I found it incredibly challenging to write my memoir which I hope will be published and out in the world before Xmas. I got so triggered by an insight I’d missed in 2018 that I couldn’t write for a whole year (2021-2022).
i totally got that this insight is to benefit others who read it but it was me that suffered to such an agonising extent for many more years so it’s been very painful. Also, generally hard work like to say. To go back to those times of desperation, lack of insight, understanding and support was really really tough and like for yourself, highlighted more unresolved trauma for me to work through.
I can happily say now, that work through it I did and now I’m out the other side and that aspect of the journey has brought me a profound feeling of peace.
Which reminds me, have you read Finding Peace Living with a Devastating Disease by Amy Corfeli?
I absolutely would and I’d love to hear your reflections when you do. Amy lived with ending undiagnosed for 17 years and wrote most of the book without diagnosis. It blows me away how she did that from such a profound place of peace x
This series has been so incredible. I am sitting outside cooling down because our house is like an oven right now.
This final story is so incredibly meaningful, and I’m grateful that you’ve told it. I hope that people who are earlier on in the chronic illness journeys are able to learn from your honest and spectacularly well written account. And that people who’ve been through similar things can find solidarity in your story, as I have.
I’ve spent a lot of my life fighting with a healthcare system that rarely believes me. The amount of systematic gymnastics required to get diagnosed, treated, and helped…it is a lot.
I’m grateful for my oppositional nature, and my instincts. Sometimes I look back at all of the health issues I’ve had and the challenges getting care and think, “how am I still alive?”
I’m glad that the things I’ve been through allow me to connect with other people going through similar things. That every time I meet someone who is chronically ill, it’s like being part of a strange club. I’ve found listening to other people and their stories such an important part of validating what they’ve gone through, what I’ve gone through.
Thank you for sharing your knowledge, your insight and for existing.
Thank you for this lovely comment - and for the camaraderie and support. I think most of us have felt the “how am I still alive?” I know I have.
Part of what made telling this story so incredibly hard was the knowledge that many other people will have gone through something similar and NOT survived. We are failing patients - especially those with complex chronic illnesses and disabilities.
My hope is that my posts reach healthcare workers who might have a change in perception as they read a first hand account of how these experiences scar us. Maybe the next time they see a similar patient - that person will be treated better.
Heartbreaking. I was wondering where your ma was in all this until you mentioned losing her at 19. Women need to know what’s normal and what’s not regrading our own bodies, for ourselves, as well as for our daughters and sisters. Lucky girl. Amazing boyfriend. Strong woman. Fucking condescending medical community. ❤️
Thank you for noticing the little nod to my Mom - that made my heart happy.
She was there for my first surgery (and she also had endometriosis which helped me get an early diagnosis)… but she died shortly after of pancreatic cancer. Going through all these gynaecological issues without my Mom was tough… and I hope that I can be an advocate and surrogate Mom for any women who need it!
During the past two decades my wife and I have had a number of major medial issues: a partial list includes 5 major back surgeries in less than 10 years for me; a brain tumor and two life-threatening intestinal issues that required major surgery for her. We have learned to NEVER leave someone in a hospital, and especially an ER, without an advocate. Even if you are a good advocate for yourself, you cannot advocate for yourself if you are unconscious or incapacitated in a drug haze.
Completely agree. My heart breaks for all the people who don’t HAVE an advocate - or who don’t realize how important it is to have someone. It’s just not somewhere you want to be alone.
I’ve become a very strong advocate for myself - but I ended up in the ER a few years ago with a suspected ruptured aneurysm (thank goodness it wasn’t) and they needed to rush me to CT. I’m allergic to contrast so the decision was made to give me high doses of Iv Benadryl and other sedating meds before the procedure. I didn’t have much time and I knew I would lose consciousness … a dear friend was in the middle of colouring her hair and dropped everything and came to be with me. She arrived with a plastic bag on her head - and I’m so so grateful she did that. She understood how critical it was.
Thank you! I’m so grateful to still be here - but also frustrated and sad that I was mistreated for so long. There will be many women who endured a similar experience and didn’t make it.
My hope is by shining light on it - we can start discussing these issues more and hopefully create safer systems and healthcare.
Hi Ginger. I'm very happy to have discovered your page via Victoria from Carer Mentor, my favorite advocate. I work as a critical-care nurse and without taking up too much of your thread I'd like to say thank you for sharing. When I was 14 my appendix ruptured and I had an open appendectomy several days later. The doctor thought I faked stomach pain because my BFF had her appendix out a week prior and my mother mentioned it to him. He also sent me for an outpatient ultrasound of my ovaries. Last year a physician I knew from work offered to give me a hysterectomy to control sometimes heavy bleeding. I have never been anemic in my life. His office called for months trying to schedule, but he forgot I once heard him say he couldn't retire and do hysterectomies which are his bread and butter all day long anymore. My choice is to advocate from the bedside and I want to hear every single story.🩷
Thank you for sharing your experience - and I’m sorry that happened to you! It’s incredible to me how often doctors will assume we’re “faking”. Surely that can’t happen very often - most people do NOT want to be in an ER.
As a critical care nurse I assume you understand the risks of a hysterectomy - and while they were conveyed to me I felt like given the rate of complications and how dire they can be - I should have been given an ultrasound on my first visit. Especially considering my labs had been getting worse the five days I was an inpatient.
I really wish I knew what it was about me that made them so dismissive - best I can surmise is it was the high pain threshold which we now know is due to the EDS. I didn’t “know”
I should be screaming in pain. It hurt - but not THAT much.
Sorry I didn’t realize I hadn’t replied to your response. I go on and off of Substack depending on my mood. Lol. That’s an awful experience I’m sorry to hear you went through it. I can only speak for myself when I say that it took me a very long time to put my own lens aside when I am assessing a patient. It’s known as transference and counter-transference. We’re taught the concept in nursing school, but it’s mostly learned on the job. I once had a patient who was quite nasty to me for seemingly no reason and later he called me into his room to apologize and say I reminded him of his ex-wife. That really drove it home for me and I’d been a nurse for about 5 years at that point. People get labeled unfortunately as drug seeking or attention seeking. I think the intentions were good, when we started to become more aware of the opioid epidemic and mental health crisis. Change takes far too many years to implement in healthcare.
It probably had very little to do with you and there wasn’t anything you did wrong. I’m working on writing something for the fall. I find the system difficult to navigate and nurses are the largest part of American healthcare system! I hope this information somehow helps you. Feel free to comment or send me a dm if you want to chat more anytime
Oh no need to be sorry - thank you for replying. I look forward to reading what you write when you write it! It’s always great to have the perspective of someone who’s been in a healthcare provider role and also a patient.
It is. I’ve been coming back to this a lot since I first read it, going through all of my experiences. It inspired me to speak out a little more from my heart. So thank you and I hope you’re feeling well better now :)
I've SO many emotions running through me right now...I'm just going to go and punch some pillows first (I need to get a proper punch bag because all my pillows are SO flat now!).
Firstly, I'm sending hugs and can only imagine how depleted you must feel from sharing all these details...when I wrote about the first part of my journey I had a major grief-hangover.. there is so much grief-trauma in everything you've shared. Self-compassion and connection, hon...just a DM away ;-)
There are so many pieces in each experience that shout injustice, that scream for the need for BIG-picture patient overview instead of transactional-fix and out...I could go on but you already know it, so I'll avoid raging with you and simply say, I'm sitting alongside you, holding your hand and sharing in your pain that I'm still trying to process the magnitude and depth of it all!
Thank you so much Victoria - for your shared rage, support and encouragement. I was so concerned about sharing this post… which is why it’s taking me so long to do it. I’m overwhelmed with gratitude from all the kind and compassionate replies.
You're very welcome, and your concerns are very understandable. I imagine it's not just about sharing but also about reliving it all in slow-mo text. Take good care of yourself these next few days.xo
I'm just so sorry you had to go through this. This is an incredibly powerful story to read, thank you for sharing something so personal, but so vital for people to hear. Training to be a Nurse opened my eyes to many things, but becoming someone with a chronic illness has opened my eyes even further to the healthcare system. I have read so many similar stories to this and it shocks and saddens me every time. It shouldn't have to be like this. I'm so grateful you made it through, but so sorry you had to fight for your life. Thanks again for writing about this, and I have found your other articles in the series so interesting and informative. Keep doing what your doing 💕
Thank you so much for the kind comments! I think what’s so sad is that my story likely isn’t terribly unique. Those of us with chronic illnesses often have multiple stories of dismissal and gaslighting - this one just happened to be my most severe example.
I hope one day we can change the system to make it more disability friendly - and help educate medical staff that not everyone responds the same way. My vitals weren’t what they expected … and I wasn’t screaming in pain because I have a high pain threshold. So they couldn’t possibly believe something serious was wrong.
Maybe we need a rule where the most basic labs are done before discharging someone? I don’t know - I just know these things happen too often and to too many people.
Change definitely needs to happen. I find it strange that in a court of law you're innocent until proven guilty, but in healthcare it seems 'Youre lying about being ill until something shows me otherwise'. Maybe when you go to A&E it should be you're ill until we've proven your healthy 😉
I was just thinking about it the other day when I was watching one of those 24 in police custody crime shows. The police offered the (yet to be proven) 'criminals' if they needed to phone people e.g family to figure out child care etc, asked if they were ok and needed mental health support, offered drink/food, gave them respect throughout the interviews. Yet me or you or anyone could go into a hospital and potentially be treated like we're a lying monster. Just seemed so strange to me 😔
I hear you! I think the point your raising for us, here in the UK, is that the ER Triage point SOP (Standard operating procedure) needs to be revamped because HOW people are assessed to determine when they get seen and by whom...doesn't seem to be working.
This is such an excellent point and I would love to read an article on it. The lack of agency given to people in the ER - and the potential for abuse - is a big problem.
I was in the ER once on a gurney beside a man having a (thankfully mild) heart attack. He was panicked about his car because it was parked somewhere it would get towed. No one offered to help him. They wouldn’t let him to move it - and it was clearly making him worse.
I ended up moving it for him since I was “just” in the ER for my anemia and could go do it… but I remember thinking how crummy it was that no one would assist him and in fact talked down to him that it was a “stupid” thing to worry about.
Even able bodied people should always have an advocate when going to the hospital. Many people do with a romantic partner, however more and more women are choosing to stay single; if that’s you (and it’s me too), ensure you have a trusted person who knows your full health record and your preferences (put these in writing, DNR, etc.). Ideally this would be your legal Power of Attorney so they can make decisions for you if you can’t. This is exceptionally important, it could be your life, and many women do not think about it.
If you can’t pay a lawyer to formally draw up a will, POA, and living will you can find templates for free online, put something in writing today and make sure someone you trust knows where to find it (better yet has a copy), and have it witnessed by a third person. This will serve for legal purposes. This is truly self-care.
Such important advice! I’m single too and have a robust advance directive and friends I trust to execute it. It’s so important - you don’t want the wrong person making life and death decisions for you.
Thank you for being brave and sharing your story. I'm sure reliving this has brought up a lot of emotions for you, and I hope you've felt supported by these comments of love everyone is sharing. I had something happen (or rather not happen) at an ER a few years ago that left me confused and upset, so I know a little bit about this experience and what it feels like to be dismissed. I'm glad you had someone looking out for you and helping you to get the treatment and care you needed.
Thank you Shelby! It definitely brought up a LOT of feelings and emotions and I had to take a break to process all of it. But my hope is it helps over patients feel a little less alone.
A while back. I ran across a Twitter post begging for help for a very young lady desperately seeking a hysterectomy for her freakishly severe nightmare endo. I have friends who are medical doctors and my autistic intolerance for injustice compelled me to get involved and reply - I would help.
This poor girl, I don't remember exactly how old but not yet 21, had severe endometriosis - but specifically, instead of the lesions forming in or around her uterus or intestines or anywhere in her abdomen, hers were forming **in her fucking lungs.** Did you know that's a thing that can happen? I did not. I reached out to my doctor friend and asked him if he could give me the info of any ob/gyn he knew of who would provide a hysterectomy to a 19-20 year old. She could not find anyone who considered the fact that she was currently spending one week out of every month *desperately struggling not to drown in her own blood* a higher priority than the children they insisted she'd want some day.
Actually what I said to him was along the lines of, "AIR. Without it, nothing really matters." And he couldn't argue, so he used his doctor network to locate an ob/gyn who would do it. But not before asking why not "just" remove the lesions instead, to which I told him "because you really want to do a big ole surgery on her lungs? Why, so her lungs can scar up and the lesions just come back in 3 weeks?" And I guess I was right about that too, because he quit pushing back entirely at that point.
I sent the info along and last I'd heard - after having spent years searching for help in between trying to not suffocate - she'd had the hysterectomy, and was living her best life no longer struggling to cough up blood and clots whenever aunt Flo drops by.
I did know that! I’ve actually had a collapsed lung on my cycle. It can even go to the heart and brain and skin - it’s a really insidious disease.
I’m so glad the hysterectomy worked for her! I kept my ovaries so I still have endo growth - but thankfully it’s not as bad as it was when I still had my uterus (plus not almost bleeding to death every month helps)
Okay, so I have a horror story I'm writing out which explains how I learned that Catholic hospitals, at least in Central Texas, have had a policy about failed miscarriages where they just let you bleed out until you reach Stage IV obstetric hemorrhage, aka having lost 2000 mL of blood, before they will intervene and do anything.
They do this knowing fully well whether or not they have enough blood product on hand to give you a transfusion. If you are O-, like me, this means lol nope probably not. In fact, what they have available almost certainly will not even be close, but I'll get to that.
Anyway, this has happened to be more than once, which is why I'm so certain it's the case, and the last time it happened, my right lung collapsed at the same time. The GP said my ribcage was just shaped in such a manner that it happened to be prone to lung collapse, which... maybe he's right and my ribcage *is* shaped weirdly such that my lung collapses every now and then? But the timing seemed too coincidental - I felt something inside me give, followed immediately by the rush of blood and clots firehosing out of me as I topple to the floor with a sudden crushing pain ripping across the right side of my chest from my floating rib to my collarbone.
I never actually believed the GP about it being coincidence, but I've never been able to google my way to anything explaining why those things happened simultaneously. But you've had basically the same thing happen to you so maybe you know. Does catastrophic exsanguination play a role in it, and if so, what role?
I’m not sure if the blood loss plays a role to be honest - my lung collapse actually happened after my hysterectomy (though a large ovarian cyst had ruptured which filled my belly with blood). We desperately need more research into endometriosis and most women’s health issues!
I sat here reading this asking myself how in the name of God, at 24, were you able to pay for any of this? Then I saw the thing about being in Canada. If you has been in Texas, you'd have gone toes-up long before the hysterectomy, for lack of insurance. You really are lucky to be alive.
I've been debating writing/publishing my own #MedicalMisogyny horror stories (plural, because: Texas) and you've convinced me to finish. I'll link you when it's done. You'll love it, by which I mean, you'll hate it at the same time you'll relate to it so hard.
Yes I’m very grateful to be in Canada. The hysterectomy was my 7th major surgery and I was barely making ends meet - no way could I have paid for a nearly month long hospital stay! It’s atrocious that people in the US have to worry about that AND their health.
I’m glad my article convinced you! I have multiples too - and will definitely share more. I think the more we talk about this the more we can (hopefully) change things.
Looking forward to your article (that sounds weird to say given the subject matter but I hope you know what I mean)
Heh, people in the US don't worry, we just suffer a while. Then we die.
Actually it's not as bad as it was before Obamacare. Before Obamacare, most people - especially young people - had the ER or nothing, and EMTALA was passed in 1986 because ERs were so egregious about dumping patients based on presumed ability to pay. After EMTALA - actually, I don't know for sure that you would have survived because the treatment you needed until you got the H probably would not have been considered an emergency condition for the maintenance blood transfusions, I don't think? They would have made you wait til you were worse off, which would have killed you through negligence, I think?
Wrt #medicalmisogyny - fun fact. In the US, until Obamacare, being female was considered by insurance to be a pre-existing condition, and almost all plans excluded coverage for maternity and reproductive health. You had to buy coverage for that on a separate policy called a rider. Here's one for the very pinkest possible tax - even without a maternity rider, you would be charged higher premiums than men - even though your healthcare consumption was very likely to be far more stable and predictable across your entire life.
Also, prior to Obamacare, there was a thing in the US called 'single mom credit' which meant you had very, very bad credit due to the number of hospital bills sent to collections from having had to take your kid to the ER because your job didn't offer benefits, so you had no way to get them insurance coverage, so you couldn't bring them to see a regular pediatrician.
That’s terrible! I’ve been learning a bit about EMTALA and I sincerely hope it and Obamacare don’t get taken away after the next election. They seem really necessary.
TBH I had that thought too, and was bracing for a bankruptcy horror story following the medical trauma. I was born and raised in the US but moved abroad 16 years ago. Now I only have the medical misogyny and immigrant discrimination to fight, not the horrific surprise medical bills. Yay!(?)
I am speechless. I am so stunned but not surprised by the recount of your living nightmare. It is so demoralizing to be dismissed at your most vulnerable moments...my heart just aches reading this.
Thank you Eileen. I think the worst part is knowing - without a doubt - that it’s happened to countless others. Many of whom may not have lived to tell the tale.
We really must be better at listening to patients - especially female ones.
Your story had my blood pumping and I'm so glad you had such a wonderful and stalwart advocate. You're right. It should have never happened to you or anyone else. I'm sending you love and hugs just because I felt what you experienced through your words.
Sharing this will change lives. Appreciate your resources as I'm going to share with someone I know who could be supported by them. ❤️
Thank you Kelly! Very difficult to write but I hope it helps some people see how easily those of us with chronic illnesses and disabilities can be ignored and gaslit.
WOW…this is ENRAGING. You quite literally were left for dead by the very people responsible for keeping you alive. The hubris that exists in medicine is out of control. So much gatekeeping and people’s lives are on the line.
Thank you for sharing this. Would it be okay if I shared this post in my next roundup post? More people should read stories like yours.
Ansolutely! I would be honoured (and thank you for asking). I feel so strange right now because I’m proud I put my story out there - but I also feel raw and vulnerable that it’s out there. I genuinely hope it helps others … because we are dismissed far too easily and disbelieved when we share our stories.
Also I know we’ve talked about MCAS before - but it’s highly likely it played a role too. MCAS can cause your body to secrete heparin and complicate bleeding issues. A real mess if you also have vEDS (or any EDS really).
Wow, I didn’t know that MCAS connection. Thank you for educating me on that.
You’re welcome! I find people often think of MCAS just in terms of histamine - when in reality the mast cells secrete so much more than that! Heparin and prostaglandin are big issues for me.
I was wondering how you were feeling after sharing a story of this magnitude. This does shine a light on the systemic issues that are so prevalent within our healthcare. It’s a devastating youth you have experienced in so many ways. With little to no care and support. Only a myriad of complications to add to the load.
It’s really fascinating the toll sharing something like this can take. In some ways it’s cathartic and I’m really happy it’s out there and will hopefully help other people - but reliving it and putting it all down on the page was hard work. There’s still a lot of unresolved trauma to work through.
There’s no doubt this will help others. It’s helped me get to know you more too and understand more deeply about why you’re sharing what you’re sharing.
I found it incredibly challenging to write my memoir which I hope will be published and out in the world before Xmas. I got so triggered by an insight I’d missed in 2018 that I couldn’t write for a whole year (2021-2022).
i totally got that this insight is to benefit others who read it but it was me that suffered to such an agonising extent for many more years so it’s been very painful. Also, generally hard work like to say. To go back to those times of desperation, lack of insight, understanding and support was really really tough and like for yourself, highlighted more unresolved trauma for me to work through.
I can happily say now, that work through it I did and now I’m out the other side and that aspect of the journey has brought me a profound feeling of peace.
Which reminds me, have you read Finding Peace Living with a Devastating Disease by Amy Corfeli?
Wow a memoir is a huge achievement! Congratulations!!! Just writing this has completely exhausted me. Hopefully these things will get easier in time.
I haven’t read that book - shall I add it to the list?
I absolutely would and I’d love to hear your reflections when you do. Amy lived with ending undiagnosed for 17 years and wrote most of the book without diagnosis. It blows me away how she did that from such a profound place of peace x
This series has been so incredible. I am sitting outside cooling down because our house is like an oven right now.
This final story is so incredibly meaningful, and I’m grateful that you’ve told it. I hope that people who are earlier on in the chronic illness journeys are able to learn from your honest and spectacularly well written account. And that people who’ve been through similar things can find solidarity in your story, as I have.
I’ve spent a lot of my life fighting with a healthcare system that rarely believes me. The amount of systematic gymnastics required to get diagnosed, treated, and helped…it is a lot.
I’m grateful for my oppositional nature, and my instincts. Sometimes I look back at all of the health issues I’ve had and the challenges getting care and think, “how am I still alive?”
I’m glad that the things I’ve been through allow me to connect with other people going through similar things. That every time I meet someone who is chronically ill, it’s like being part of a strange club. I’ve found listening to other people and their stories such an important part of validating what they’ve gone through, what I’ve gone through.
Thank you for sharing your knowledge, your insight and for existing.
Thank you for this lovely comment - and for the camaraderie and support. I think most of us have felt the “how am I still alive?” I know I have.
Part of what made telling this story so incredibly hard was the knowledge that many other people will have gone through something similar and NOT survived. We are failing patients - especially those with complex chronic illnesses and disabilities.
My hope is that my posts reach healthcare workers who might have a change in perception as they read a first hand account of how these experiences scar us. Maybe the next time they see a similar patient - that person will be treated better.
Heartbreaking. I was wondering where your ma was in all this until you mentioned losing her at 19. Women need to know what’s normal and what’s not regrading our own bodies, for ourselves, as well as for our daughters and sisters. Lucky girl. Amazing boyfriend. Strong woman. Fucking condescending medical community. ❤️
Thank you for noticing the little nod to my Mom - that made my heart happy.
She was there for my first surgery (and she also had endometriosis which helped me get an early diagnosis)… but she died shortly after of pancreatic cancer. Going through all these gynaecological issues without my Mom was tough… and I hope that I can be an advocate and surrogate Mom for any women who need it!
During the past two decades my wife and I have had a number of major medial issues: a partial list includes 5 major back surgeries in less than 10 years for me; a brain tumor and two life-threatening intestinal issues that required major surgery for her. We have learned to NEVER leave someone in a hospital, and especially an ER, without an advocate. Even if you are a good advocate for yourself, you cannot advocate for yourself if you are unconscious or incapacitated in a drug haze.
Completely agree. My heart breaks for all the people who don’t HAVE an advocate - or who don’t realize how important it is to have someone. It’s just not somewhere you want to be alone.
I’ve become a very strong advocate for myself - but I ended up in the ER a few years ago with a suspected ruptured aneurysm (thank goodness it wasn’t) and they needed to rush me to CT. I’m allergic to contrast so the decision was made to give me high doses of Iv Benadryl and other sedating meds before the procedure. I didn’t have much time and I knew I would lose consciousness … a dear friend was in the middle of colouring her hair and dropped everything and came to be with me. She arrived with a plastic bag on her head - and I’m so so grateful she did that. She understood how critical it was.
So glad to hear they finally solved it, and that you’ve continued to be alive.
Thank you! I’m so grateful to still be here - but also frustrated and sad that I was mistreated for so long. There will be many women who endured a similar experience and didn’t make it.
My hope is by shining light on it - we can start discussing these issues more and hopefully create safer systems and healthcare.
Thank you for sharing this very important series, and for the shout out. It's my pleasure to help support you and your new pub!
Thank you (as always!) for your help. It’s been invaluable and I’m very grateful.
Hi Ginger. I'm very happy to have discovered your page via Victoria from Carer Mentor, my favorite advocate. I work as a critical-care nurse and without taking up too much of your thread I'd like to say thank you for sharing. When I was 14 my appendix ruptured and I had an open appendectomy several days later. The doctor thought I faked stomach pain because my BFF had her appendix out a week prior and my mother mentioned it to him. He also sent me for an outpatient ultrasound of my ovaries. Last year a physician I knew from work offered to give me a hysterectomy to control sometimes heavy bleeding. I have never been anemic in my life. His office called for months trying to schedule, but he forgot I once heard him say he couldn't retire and do hysterectomies which are his bread and butter all day long anymore. My choice is to advocate from the bedside and I want to hear every single story.🩷
Thank you for sharing your experience - and I’m sorry that happened to you! It’s incredible to me how often doctors will assume we’re “faking”. Surely that can’t happen very often - most people do NOT want to be in an ER.
As a critical care nurse I assume you understand the risks of a hysterectomy - and while they were conveyed to me I felt like given the rate of complications and how dire they can be - I should have been given an ultrasound on my first visit. Especially considering my labs had been getting worse the five days I was an inpatient.
I really wish I knew what it was about me that made them so dismissive - best I can surmise is it was the high pain threshold which we now know is due to the EDS. I didn’t “know”
I should be screaming in pain. It hurt - but not THAT much.
Sorry I didn’t realize I hadn’t replied to your response. I go on and off of Substack depending on my mood. Lol. That’s an awful experience I’m sorry to hear you went through it. I can only speak for myself when I say that it took me a very long time to put my own lens aside when I am assessing a patient. It’s known as transference and counter-transference. We’re taught the concept in nursing school, but it’s mostly learned on the job. I once had a patient who was quite nasty to me for seemingly no reason and later he called me into his room to apologize and say I reminded him of his ex-wife. That really drove it home for me and I’d been a nurse for about 5 years at that point. People get labeled unfortunately as drug seeking or attention seeking. I think the intentions were good, when we started to become more aware of the opioid epidemic and mental health crisis. Change takes far too many years to implement in healthcare.
It probably had very little to do with you and there wasn’t anything you did wrong. I’m working on writing something for the fall. I find the system difficult to navigate and nurses are the largest part of American healthcare system! I hope this information somehow helps you. Feel free to comment or send me a dm if you want to chat more anytime
Oh no need to be sorry - thank you for replying. I look forward to reading what you write when you write it! It’s always great to have the perspective of someone who’s been in a healthcare provider role and also a patient.
It is. I’ve been coming back to this a lot since I first read it, going through all of my experiences. It inspired me to speak out a little more from my heart. So thank you and I hope you’re feeling well better now :)
I've SO many emotions running through me right now...I'm just going to go and punch some pillows first (I need to get a proper punch bag because all my pillows are SO flat now!).
Firstly, I'm sending hugs and can only imagine how depleted you must feel from sharing all these details...when I wrote about the first part of my journey I had a major grief-hangover.. there is so much grief-trauma in everything you've shared. Self-compassion and connection, hon...just a DM away ;-)
There are so many pieces in each experience that shout injustice, that scream for the need for BIG-picture patient overview instead of transactional-fix and out...I could go on but you already know it, so I'll avoid raging with you and simply say, I'm sitting alongside you, holding your hand and sharing in your pain that I'm still trying to process the magnitude and depth of it all!
Thank you so much Victoria - for your shared rage, support and encouragement. I was so concerned about sharing this post… which is why it’s taking me so long to do it. I’m overwhelmed with gratitude from all the kind and compassionate replies.
You're very welcome, and your concerns are very understandable. I imagine it's not just about sharing but also about reliving it all in slow-mo text. Take good care of yourself these next few days.xo
Absolutely - it took me weeks to write it out so it’s been a difficult time - the support I’m getting on here means so much to me!
I'm just so sorry you had to go through this. This is an incredibly powerful story to read, thank you for sharing something so personal, but so vital for people to hear. Training to be a Nurse opened my eyes to many things, but becoming someone with a chronic illness has opened my eyes even further to the healthcare system. I have read so many similar stories to this and it shocks and saddens me every time. It shouldn't have to be like this. I'm so grateful you made it through, but so sorry you had to fight for your life. Thanks again for writing about this, and I have found your other articles in the series so interesting and informative. Keep doing what your doing 💕
Thank you so much for the kind comments! I think what’s so sad is that my story likely isn’t terribly unique. Those of us with chronic illnesses often have multiple stories of dismissal and gaslighting - this one just happened to be my most severe example.
I hope one day we can change the system to make it more disability friendly - and help educate medical staff that not everyone responds the same way. My vitals weren’t what they expected … and I wasn’t screaming in pain because I have a high pain threshold. So they couldn’t possibly believe something serious was wrong.
Maybe we need a rule where the most basic labs are done before discharging someone? I don’t know - I just know these things happen too often and to too many people.
Change definitely needs to happen. I find it strange that in a court of law you're innocent until proven guilty, but in healthcare it seems 'Youre lying about being ill until something shows me otherwise'. Maybe when you go to A&E it should be you're ill until we've proven your healthy 😉
Hi Amanda - that's a brilliant point, maybe an article you could write?
I was just thinking about it the other day when I was watching one of those 24 in police custody crime shows. The police offered the (yet to be proven) 'criminals' if they needed to phone people e.g family to figure out child care etc, asked if they were ok and needed mental health support, offered drink/food, gave them respect throughout the interviews. Yet me or you or anyone could go into a hospital and potentially be treated like we're a lying monster. Just seemed so strange to me 😔
I hear you! I think the point your raising for us, here in the UK, is that the ER Triage point SOP (Standard operating procedure) needs to be revamped because HOW people are assessed to determine when they get seen and by whom...doesn't seem to be working.
This is such an excellent point and I would love to read an article on it. The lack of agency given to people in the ER - and the potential for abuse - is a big problem.
I was in the ER once on a gurney beside a man having a (thankfully mild) heart attack. He was panicked about his car because it was parked somewhere it would get towed. No one offered to help him. They wouldn’t let him to move it - and it was clearly making him worse.
I ended up moving it for him since I was “just” in the ER for my anemia and could go do it… but I remember thinking how crummy it was that no one would assist him and in fact talked down to him that it was a “stupid” thing to worry about.
Even able bodied people should always have an advocate when going to the hospital. Many people do with a romantic partner, however more and more women are choosing to stay single; if that’s you (and it’s me too), ensure you have a trusted person who knows your full health record and your preferences (put these in writing, DNR, etc.). Ideally this would be your legal Power of Attorney so they can make decisions for you if you can’t. This is exceptionally important, it could be your life, and many women do not think about it.
If you can’t pay a lawyer to formally draw up a will, POA, and living will you can find templates for free online, put something in writing today and make sure someone you trust knows where to find it (better yet has a copy), and have it witnessed by a third person. This will serve for legal purposes. This is truly self-care.
Thank you for sharing your story. 💙
Such important advice! I’m single too and have a robust advance directive and friends I trust to execute it. It’s so important - you don’t want the wrong person making life and death decisions for you.
Thank you for being brave and sharing your story. I'm sure reliving this has brought up a lot of emotions for you, and I hope you've felt supported by these comments of love everyone is sharing. I had something happen (or rather not happen) at an ER a few years ago that left me confused and upset, so I know a little bit about this experience and what it feels like to be dismissed. I'm glad you had someone looking out for you and helping you to get the treatment and care you needed.
Thank you Shelby! It definitely brought up a LOT of feelings and emotions and I had to take a break to process all of it. But my hope is it helps over patients feel a little less alone.
A while back. I ran across a Twitter post begging for help for a very young lady desperately seeking a hysterectomy for her freakishly severe nightmare endo. I have friends who are medical doctors and my autistic intolerance for injustice compelled me to get involved and reply - I would help.
This poor girl, I don't remember exactly how old but not yet 21, had severe endometriosis - but specifically, instead of the lesions forming in or around her uterus or intestines or anywhere in her abdomen, hers were forming **in her fucking lungs.** Did you know that's a thing that can happen? I did not. I reached out to my doctor friend and asked him if he could give me the info of any ob/gyn he knew of who would provide a hysterectomy to a 19-20 year old. She could not find anyone who considered the fact that she was currently spending one week out of every month *desperately struggling not to drown in her own blood* a higher priority than the children they insisted she'd want some day.
Actually what I said to him was along the lines of, "AIR. Without it, nothing really matters." And he couldn't argue, so he used his doctor network to locate an ob/gyn who would do it. But not before asking why not "just" remove the lesions instead, to which I told him "because you really want to do a big ole surgery on her lungs? Why, so her lungs can scar up and the lesions just come back in 3 weeks?" And I guess I was right about that too, because he quit pushing back entirely at that point.
I sent the info along and last I'd heard - after having spent years searching for help in between trying to not suffocate - she'd had the hysterectomy, and was living her best life no longer struggling to cough up blood and clots whenever aunt Flo drops by.
I did know that! I’ve actually had a collapsed lung on my cycle. It can even go to the heart and brain and skin - it’s a really insidious disease.
I’m so glad the hysterectomy worked for her! I kept my ovaries so I still have endo growth - but thankfully it’s not as bad as it was when I still had my uterus (plus not almost bleeding to death every month helps)
Okay, so I have a horror story I'm writing out which explains how I learned that Catholic hospitals, at least in Central Texas, have had a policy about failed miscarriages where they just let you bleed out until you reach Stage IV obstetric hemorrhage, aka having lost 2000 mL of blood, before they will intervene and do anything.
They do this knowing fully well whether or not they have enough blood product on hand to give you a transfusion. If you are O-, like me, this means lol nope probably not. In fact, what they have available almost certainly will not even be close, but I'll get to that.
Anyway, this has happened to be more than once, which is why I'm so certain it's the case, and the last time it happened, my right lung collapsed at the same time. The GP said my ribcage was just shaped in such a manner that it happened to be prone to lung collapse, which... maybe he's right and my ribcage *is* shaped weirdly such that my lung collapses every now and then? But the timing seemed too coincidental - I felt something inside me give, followed immediately by the rush of blood and clots firehosing out of me as I topple to the floor with a sudden crushing pain ripping across the right side of my chest from my floating rib to my collarbone.
I never actually believed the GP about it being coincidence, but I've never been able to google my way to anything explaining why those things happened simultaneously. But you've had basically the same thing happen to you so maybe you know. Does catastrophic exsanguination play a role in it, and if so, what role?
I’m not sure if the blood loss plays a role to be honest - my lung collapse actually happened after my hysterectomy (though a large ovarian cyst had ruptured which filled my belly with blood). We desperately need more research into endometriosis and most women’s health issues!
Yeah, it's amazing how many things are better just by... having the blood on the inside
My doctor friend told me that the worst place to have endo lesions was. on the brain
. . .
*inarticulate screams*
I sat here reading this asking myself how in the name of God, at 24, were you able to pay for any of this? Then I saw the thing about being in Canada. If you has been in Texas, you'd have gone toes-up long before the hysterectomy, for lack of insurance. You really are lucky to be alive.
I've been debating writing/publishing my own #MedicalMisogyny horror stories (plural, because: Texas) and you've convinced me to finish. I'll link you when it's done. You'll love it, by which I mean, you'll hate it at the same time you'll relate to it so hard.
Yes I’m very grateful to be in Canada. The hysterectomy was my 7th major surgery and I was barely making ends meet - no way could I have paid for a nearly month long hospital stay! It’s atrocious that people in the US have to worry about that AND their health.
I’m glad my article convinced you! I have multiples too - and will definitely share more. I think the more we talk about this the more we can (hopefully) change things.
Looking forward to your article (that sounds weird to say given the subject matter but I hope you know what I mean)
Heh, people in the US don't worry, we just suffer a while. Then we die.
Actually it's not as bad as it was before Obamacare. Before Obamacare, most people - especially young people - had the ER or nothing, and EMTALA was passed in 1986 because ERs were so egregious about dumping patients based on presumed ability to pay. After EMTALA - actually, I don't know for sure that you would have survived because the treatment you needed until you got the H probably would not have been considered an emergency condition for the maintenance blood transfusions, I don't think? They would have made you wait til you were worse off, which would have killed you through negligence, I think?
Wrt #medicalmisogyny - fun fact. In the US, until Obamacare, being female was considered by insurance to be a pre-existing condition, and almost all plans excluded coverage for maternity and reproductive health. You had to buy coverage for that on a separate policy called a rider. Here's one for the very pinkest possible tax - even without a maternity rider, you would be charged higher premiums than men - even though your healthcare consumption was very likely to be far more stable and predictable across your entire life.
Also, prior to Obamacare, there was a thing in the US called 'single mom credit' which meant you had very, very bad credit due to the number of hospital bills sent to collections from having had to take your kid to the ER because your job didn't offer benefits, so you had no way to get them insurance coverage, so you couldn't bring them to see a regular pediatrician.
That’s terrible! I’ve been learning a bit about EMTALA and I sincerely hope it and Obamacare don’t get taken away after the next election. They seem really necessary.
TBH I had that thought too, and was bracing for a bankruptcy horror story following the medical trauma. I was born and raised in the US but moved abroad 16 years ago. Now I only have the medical misogyny and immigrant discrimination to fight, not the horrific surprise medical bills. Yay!(?)
I am speechless. I am so stunned but not surprised by the recount of your living nightmare. It is so demoralizing to be dismissed at your most vulnerable moments...my heart just aches reading this.
Thank you Eileen. I think the worst part is knowing - without a doubt - that it’s happened to countless others. Many of whom may not have lived to tell the tale.
We really must be better at listening to patients - especially female ones.
Your story had my blood pumping and I'm so glad you had such a wonderful and stalwart advocate. You're right. It should have never happened to you or anyone else. I'm sending you love and hugs just because I felt what you experienced through your words.
Sharing this will change lives. Appreciate your resources as I'm going to share with someone I know who could be supported by them. ❤️
Thank you for saying - it was a hard thing to share so I really appreciate knowing that it will hopefully change lives!
Thanks so much for sharing your story. I know it is so hard to write, but it is powerful and people need to hear these stories. ❤️
Thank you Kelly! Very difficult to write but I hope it helps some people see how easily those of us with chronic illnesses and disabilities can be ignored and gaslit.