Disability: First, Do No Harm; Second, Listen

[Content Note: Surgery, Pain, Depression, Infertility, Mental Disorders and Ableism Language, Graphic Descriptions of Medical Mis-Care]

Ana's Note: This would normally be a Narnia day, but I wanted to take some time to talk about my 5/29 surgery in a couple of rambly posts.

"The most basic of all human needs is the need to understand and be understood. The best way to understand people is to listen to them." -- Ralph Nichols

On May 29th, 2012, I took a major step forward in my lifelong career of being Not Listened To by medical personnel by trusting that a white, male, privileged, American surgeon might put his needs ahead of my own in order to help improve the quality of my life.

And, to be honest, the jury is still a little out on that one. And will be for sometime. 

But let me first back up. When I was in my late-tweens/early-teens, I was diagnosed with scoliosis. My family and I didn't really know what that was and it sounded kind of serious, but the doctors seemed to believe that my version of the disease -- with a 45 degree of spinal curvature -- wasn't that bad. I'd need a little minor spinal fusion surgery, five vertebrae would be solidified into a single bone mass, a metal rod would be welded in place to provide some support, I'd overall lose some range of motion, but I'd be fine, really. I'd be able to grow up and have babies and take horseback lessons and ride roller coasters and play the piano with my bare feet. Certainly nothing to panic about, and because the world was young and we were innocent and Google didn't exist as part of our cultural vocabulary, this all seemed very reasonable and dealable with.

So we dealt with it.

The dealing with it was not, actually, all that fun. In the first night after the surgery, my pain medication IV popped out unbeknownst to the nurses and as I complained of higher and higher pain, the doctors and nurses scrambled not to fix my pain, but to explain it away. "Of course she's going to be in some pain; she's just had surgery," they chided my increasingly frantic mother. And thus were my complaints of pain something shoved aside, ignored, and ultimately not listened to. Probably my popped IV would never have been discovered at all except that finally -- hours after I'd begun to pass in and out of a gurgling semi-consciousness -- my pulse and blood pressure elevated high enough that a more serious investigation was launched at which point it was noted that the IV that had been taped into my back had fallen out some hours before. Whooops! Once the IV was reinserted in my wrist, however, everything was lovely forever, or rather it was supposed to be.

When I had my surgery performed as a child, that particular spinal fusion surgery was not the most long-established surgical practice in the world then but neither was it new -- indeed, it was old enough then that I was part of the last generation of children to receive the Harrington rod construction; soon the world would move on to newer and better things. So it really should not have been a surprise to medical professionals when pain began to encompass more and more of my life in the years after my surgery, due to the simple and utterly-foreseeable fact that my spinal fusion surgery had failed in one of the most common ways that spinal fusion surgeries are known sometimes to fail: I had pseudarthrosis.

And yet, inexplicably, it was treated as a complete mystery as to why my surgery didn't alleviate my back pain. I went to yearly check-ups at the childrens' hospital and mentions of my constant "background radiation" pain were met with exhortations to myself and my family that "of course she's going to be in some pain; she's had a back surgery." And once again, my complaints of pain were shoved aside as nothing more than histrionics, as attention-seeking, as something not worth listening to. When my parents persisted in their advocacy -- "but she's in so much pain, surely this can't be right!" -- they were told to go away and buy newer, better things: clothes, shoes, mattresses, cars, carpets, couches, wheelie backpacks. Clearly our problem was that we were buying the cheapest versions of these things, and spending more money for higher quality would make all the difference in the world. My parents, blessed with good jobs and good educations and good intentions, did the best they could, but the situation didn't improve.

When I was too old to visit the children's' hospital anymore, I was shuttled from specialist to specialist, all of whom did the exact same sequence of things:

  1. Take yet another x-ray to verify that the metal spinal implants were in good condition.
  2. Give me pain pills that failed to assuage my pain. 
  3. Diagnose me with depression when -- after weeks of bullying -- I'd cry in frustration at being repeatedly told my pain was all in my head since the pills hadn't alleviated it and the x-rays had shown no cause for it.

And so now I had a documented medical history of mental illness and mental disorders, all because I stubbornly continued to insist that I was in pain even though I "shouldn't" have been. The machines taking the x-rays reported back that my spinal hardware was clean and operational; the experts measuring out the medication dosage insisted that no pain could survive the medical miracle science being poured down my throat. My statements to the contrary were not worth listening to, except insomuch as they provided a fascinating psychological profile as to how mentally disturbed I clearly was. 


When I went to a dedicated scoliosis center in 2010, I went after having seen over 40 doctors and specialists and after having been diagnosed with and medicated for depression dozens of times, simply because I felt pain that those doctors couldn't explain. I had, after all, had the scoliosis surgery. Everything was supposed to be all better and the x-rays indicated that the Modern Medical Miracle Science rod in my back was still straight and shiny and clean. Clearly my problem was mental, and in 2010 I was just about ready to accept that. I would make one final effort to be heard and diagnosed and if this newest guy said it was all in my head, I'd let it all go and start seeing a therapist for realsy. I didn't feel like I had the emotional strength to keep fighting to be believed.

When I met the man who would become my surgeon in 2012, the first thing he said to me was "I can tell you exactly what's wrong with you. I just can't understand why no one else has been able to when it's so obvious." And then he showed me, right there on all those dozens of x-rays, where little gray blank spaces lay between my supposedly-fused vertebrae. Vertebrae that, had they been fused into a single bone mass, would have presented to the x-ray machine only an unbroken white line.

I wanted to kiss him, right there and then, for finally validating what I'd known in my heart to be true all my life. I was in pain. And now, thanks to this man, I could prove it. People would have to listen to me now. People would be able to finally help. But the problem with the medical community is that it's Not That Simple. Here I had a doctor who finally understood what was wrong with me, but I wasn't anywhere closer to having a doctor who understood the importance of listening to me.

And this is important. Because people respect things that are wrong with you. "I have an upcoming surgery" has opened so many doors to me in the last few days that I wouldn't have believed possible. "I have an upcoming surgery." Bing! Government medical parking permit that I've been trying to get renewed since college. "I have an upcoming surgery." Bing! Extended company medical leave that some of my friends in the same company have been struggling to obtain for their personal needs for years. "I have an upcoming surgery." Bing! Extreme pixie cut with bright red highlights without even a whisper of the obvious but-you-have-a-fat-face caution from the hairstylist.

But even though many people, and most doctors, respect what is wrong with me (once diagnosed as such by the proper medical authorities and not merely a function of my own personal experience and intuition because obviously that is woo and is not to be trusted), that doesn't bring them automatically closer to listening to me. And the same unwillingness to listen to me that kept me from being correctly diagnosed for over a decade of my life reared its ugly head again from the moment I checked in for surgery in late May to the moment I was released to go home in early June. 


The weekend before my surgery was spent at the hospital, as part of what they call "pre-op". And let me just say that the genius who came up with this plan needs some serious quiet time to go sit in hir room and think about what zie has done, because here is how pre-op works here: you show up at 8:30 am to be checked in for a chest x-ray and blood work, then you go over to the doctor of Internal Medicine for an EKG and to be generally cleared as healthy enough for surgery, and then you go over to your specialist surgeon to finalize the approach for what precisely they will do to you in surgery, and then finally at around 2 pm you and your family will receive a tour of the facilities where you will be staying along with a list of rules about visiting hours and locker locations and you will have a nice chat with an occupational therapist who will tell you what items you need to bring for "practice" (shoes for walking, clothes for dressing, underwear sized up for water retention, etc.).

And there is literally nothing that is not wrong about this stellar plan because:

  • You are not given time for lunch, so you're absorbing a lot of high-mental and high-emotional level material on a rapidly dropping blood sugar level.
  • You are expected to duplicate everything from the eight different allergy forms filled out to the multiple different x-rays for different departments and really I have had SO MUCH RADIATION EXPOSURE IN MY LIFE and WHY CAN'T YOU PEOPLE SHARE THESE THINGS.
  • You are given pretty much no time to roll with the punches, such as the bombshell dropped on me by my surgeon that not only would he not be taking the old-and-no-longer-providing-structural-benefits metal OUT, but he would also be adding new-and-therefore-associated-maintenance-risks-for-the-future IN. And he would be doing all this through a new scar going from shoulder blade to tailbone instead of going through my old scar that zips from shoulder blade to hip which means I now feel irrationally lop-sided.
  • You are doing all this literally days before surgery, and long after having been cleared to take time off for work, which means that if the Internal Medicine guy refuses you clearance, then you've wasted a LOT of time and effort getting to this late in the game...
  • ...and even if you are cleared, the whole "buy button-up shirts and sized-up underwear between now and then" guarantees that the pre-surgery days are going to be stressful and packed with emergency shopping that could have been taken care of long before if only you'd known you needed to.
  • And for all that, most of the information ended up being wrong: in actual playthrough, OT wanted me to walk in my socks (sans shoes) and leave my hospital gown on (sans button-up shirts) at all times (sans underwear) for various unimportant reasons.

But you know what? Whatever. Que sera sera. This isn't a post about inefficiencies in the medical community and how I could schedule everything better if they put me in charge because yeah, no. Instead, I mention all this so that I can tell you what happened in the office with the Internal Medicine Guy who was charged with clearing me as healthy enough for surgery. Because the Internal Medicine Guy looked me in the eye and asked if I had any preexisting conditions not listed in my chart that they might want to know about going into surgery. And I thought for a very long moment before deciding that I did in fact have one that he needed to know about. And I said, very carefully, "Well, you will probably want to write down that I've been diagnosed with Chronic Fatigue Syndrome based on extremely high elevated levels of Epstein-Barr virus in my blood."

And he smirked at me.

"These doctors," he said, with a conspiratorial shake of his head and a mischievous wink of his eye, "they don't understand that everyone on earth has Epstein-Barr virus in their blood. They'll diagnose anyone with CFS these days, I swear. I really don't think that you need to worry." He didn't quite pat me on the head, but the offer seemed to be on the table.

I stared at him, a little perplexed and not at all sure how to clarify the situation. Yes, I said, I knew that everyone on earth had low levels of the Epstein-Barr virus. I explained that my doctor had diagnosed me based on extremely elevated levels within in my blood, as well as a number of supporting symptoms as well. The diagnosis had been with me for two years and had seemed to have been borne out through home care and lifestyle treatment. I'd additionally read that CFS could cause complications in surgery and with blood transfusions and I thought it was worth writing on my chart.

This didn't seem to be what the doctor had been planning to hear. He became testy with me, explaining that maybe I did have CFS, anything is possible, after all, but it wasn't like a world-renowned leader in CFS studies hadn't worked just two floors above him until his recent death and it wasn't like they hadn't been close enough friends for the CFS-expert to recommend "The Girl With The Dragon Tattoo" to the Internal Medicine Guy as worthwhile reading, so it wasn't like he knew anything about all this, but all he was saying was that he really didn't think I needed to be so worried about it.

And at the end of all that, the words "Chronic Fatigue Syndrome" didn't go into my chart. It was almost as thought I'd never said them; certainly, no one in the room had been ready to listen to me.


Later that same day in pre-op, we met with my scoliosis surgeon. And though we'd been planning this surgery, he and I, for two years almost to the day at that point, and though I'd been adamant throughout that I wanted no new metal attached to my spine (I wanted the old metal taken out, but he'd felt it would be unsafe to do so and I'd capitulated), on this last final visit before my surgery, he announced that more metal would go in.


I wasn't given a chance to discuss it. There wasn't the time: he had to go off to see another patient, and at that point what could I do? He was the expert. I was the patient who'd filled out reams of leave-of-absence forms for work and made hotel reservations and made a thousand other plans, none of them easily unmade. No explanation was given for how much more metal would go in, at no point after the surgery would the new x-rays be brought in for me to see, at no point was my consent or my opinion in the matter considered even remotely of value. I was left numb, shaking, and biting back tears.

Before he left the room, my surgeon off-handedly noted that we might have to do a third surgery at some point in the future and that we'd "just have to see". After he swept out of the room, I looked at Husband and bleakly asked if he thought my surgeon had ever heard anything I'd said to him in the past two years worth of planning.


On the day of the surgery, I arrived at the hospital at 5:30 am, nervous, shaking, and having had zero food or liquids since midnight the night before.

I also arrived not pregnant. 

At almost every moment within the last two years, I have been intensely conscious of the fact that I am not pregnant. My husband has had a vasectomy. I am infertile. I have periods that are so irregular that I can't swear to ever having the same cycle length twice in my lifetime, let alone twice in a row. I barely bother to even map the cycle dates anymore because doing so reminds me that I am not now and will never be pregnant. But I simply cannot visit a hospital without getting the Spanish Inquisition about the state of my uterus. The last time I was at my local hospital for a routine x-ray, I had the question popped on me whilst I was naked-under-a-gaping-gown and alone with two very young male x-ray technicians, who kept confusedly asking me if it would help if they "got me a calendar". There are not enough teaspoons in the world for that situation.

Now not thirty minutes before going into my surgery this time, a wild-eyed nurse barged into our waiting room with me in full-gown regalia, IV drip already in place, and having fasted the night before (so therefore not a lot of urine available for me to give) and dramatically announced that my surgery would have to be canceled if I couldn't PROVE right there and then that I wasn't pregnant. "It's okay," I said, I little relieved to have a ready answer. "My last period was six days ago." This was not good enough. "And I'm infertile." Not good enough. "And my husband has had a vasectomy." Still not good enough.

If it were not hard enough to be childless-not-by-choice, I have to go through this Every Single Time I experience healthcare. This surgery had been on the books for months, but I couldn't be trusted to make sure I didn't get pregnant in that time period. They were just about to start drawing blood for a blood test -- blood that I very much needed inside me in preparation for the upcoming surgery -- when I finally managed to produce some urine that could have been my husband's for all they knew since it wasn't like they monitored me giving it. "Good news!" one of the nurses crowed cheerfully from the bathroom where she was dipping the pregnancy test into my Dixie cup. "You're not pregnant!" So now cue me biting back more tears.

And, once again, in the name of Lawyers Everywhere and Unborn Unicorn Baybees, one more patient is traumatized for owning a non-working uterus and for living in a world that simply refuses to prioritize listening to patients.


After I woke from my surgery, I was in pain. Horrible pain. The worst pain I have ever been in, bar none. Full-on, no-holds, please-kill-me Aliens-style pain.

"I am in pain." I informed every nurse and every doctor that walked in that ICU room for the next twenty-four hours. "I am at a Pain Level 10." And each-and-every one explained to me, very patiently as you would to a particularly dense child, that, yes, I had just had surgery and that I would experience some pain now. And that that was very, very normal. And did I want a pat on the head, presumably. And each and every one of them would not listen to me.

"I know I have had surgery." I would reply very calmly. "I have had this exact surgery before, many years ago. I know the difference between normal post-surgical pain and abnormal post-surgical pain. This is the latter, and there is something Very Wrong." And each-and-every one would gently explain that every surgery is different and you can't compare one with the other and that it simply is not possible to take away pain entirely after a surgery. And each and every one of them would not listen to me.

"I want you to check my IV." I explained that all this had happened before, when I was a child, and that I believed that maybe the IV had come loose or that something was wrong with the drug delivery system. And each-and-every one of them assured me that the IV was fine without bothering to even check it, and that everything was wonderful, that my blood pressure was just fine and didn't indicate high levels of pain, and that the pain I was supposedly experiencing was actually all in my head and not real at all and I needed to relax and stop working myself up into a frenzy. And each and every one of them would not listen to me.

Because of course I am too childlike to understand the difference between appropriate-pain and inappropriate-pain and I was instead, obviously, just bucketing all pain in the Do Not Want bucket of inappropriate-pain. And of course I am too mentally disordered to be able to experience any non-psychosomatic pain and I was instead, obviously, just mentally conjuring up pain because of female hysteria or something. Because the alternative was that the machines might not be working or the patient might be unique and what with both of those things being unthinkable, each-and-every doctor and nurse in the lot of them could safely ignore whatever came out of my mouth to the contrary.


Twelve hours after my surgery, while I still writhed in pain and begged someone to diagnose why my pain was so excruciatingly high, my husband was asked to leave the ICU and "get some sleep" since there weren't any cots in the ICU for him to rest on and since visitors weren't really supposed to spend the night there anyway. I wasn't thrilled about being left alone for the night while I was still in excruciating pain, but I told him to go on and that I'd call him if things got worse.

On his way out, I had the pleasure of meeting my night nurse. My night nurse -- a nurse I shared with one other patient, due to the ICU ratio of one nurse to two patients -- was very young and very brusque. When I'd asked if she would check if my IV was operating properly (I'm so sorry to be a bother, but I'm really hurting really badly), she'd briskly reprimand me that "of course you hurt; you've just had surgery" and then left the room without checking the status of my IV. When I asked her the current time and when the pain specialist might be expected to arrive, she'd picked at her nails and said in a bored tone that she didn't know and I'd have to "ask someone else".

But the turning point of the evening came when the medicine in my IV ran out and my monitor beeped for seven minutes straight with no response from anyone on the floor. As my already-high pain began to escalate further, I began to panic. No one answered my "nurse call" buzzes or weakened vocal pleas for help, so in desperation I started carefully-and-gently banging my Nurse-Call-slash-Bed-Remote-slash-Television-Control on the side of my bed rail for a loud clang sound that I hoped might resonate down the long hall. That got my nurse's attention, and she strode angrily into the room within less than a minute after the banging started.

"What do you think you are doing?" she demanded.

"I --. My IV is out of medicine. I didn't think anyone heard the beeping or the call button, so I --"

"We can all hear your IV. That doesn't mean you're the most important person here because you're not."

"I'm sorry," I stammered. "I didn't mean to be trouble, I just didn't know how else to get help."

"You wait."

I thought about that for a moment while she surlily replaced the bag of medicine in my machine. My mouth felt dry; I hadn't been allowed to drink anything for going on twenty-four hours. I felt miserable and tired and in so very much pain. I decided to swallow my frustration and try to be as meek as possible. "I'm sorry. May I please have a sponge of water?" I gestured at the little water sponge popsicles I'd been allowed to suck on once every few hours.

She glared at me. "Just one, but then I have to go deal with my other patient and you have to stop calling me in here for every little thing just because you're bored."

And that was when I made a decision. It wasn't one I could have made years ago, and it's not one that everyone has the privilege to make. But I had the privilege and I was too scared and too pained to worry about social Good Girlism any longer and I heard myself saying:  

"Will you please call my husband and get him back up here?" 

There's not a happy ending to this story, by the way, where suddenly I grew a back-bone two sizes too large and everyone started listening to me and I stopped being pushed around by the Patriarchy forever. I'd asked for an advocate (and, in doing so, asserted that the hospital was failing in their duty to advocate for me) and I'm proud of myself that I did, but that doesn't change the fact that my nurse flat-out refused to do so.

She pointed out that it was 4 am and that my husband was "probably sleeping" and that I had "no reason or right" to disturb him at this hour. I argued that he could get me the water sponges that she didn't have time to get me, and she countered that with shaming: I might be a bad enough wife to insist on my husband being woken up over a little thing like my being thirsty in ICU, but she wasn't going to be a party to it. But because I simply couldn't bear to be in pain and alone for a moment longer, I clenched my teeth and told her that he was my husband and she would call him for me whether she agreed with my decision or not, thank you very much.

She left the room. When my medicine needed changing out an hour later and she popped back into the room to turn off the beeping machine, I asked her if she'd reached my husband. "His phone was off," she said shortly. That didn't surprise me; he'd probably turned it off without thinking before falling into bed. "Then I need you to call my parents," I said. They had the hotel number where Husband was staying and they could get through to him or they could come down and advocate for me in person. Once again, she refused and at this point -- almost 24 hours from being cut open by a surgeon and in the same searing pain I'd been in since the moment I'd woken up afterwards -- I finally and simply passed out cold. I literally didn't have the ability anymore to try to make them listen to me.

I have two memories after that one, so hazy and close together that I can't remember which came first.

One memory is of Husband gathering me up in his arms and promising not to leave me again, no matter what the ICU people told him to do. The second memory is of an older man asking me if I'd ever taken anything that might impact the behavior of my internal pain receptors (possibly marijuana or some other recreational drug?, he suggested sternly) and my dazedly insisting that if I had, I'd happily tell him so if it would help him stop the the pain, but I hadn't.

Both these incidents -- the summoning of my husband by the hopsital and the arrival of the pain specialist -- had the same root cause: after my final fainting bout, my blood pressure had tanked to the point where my pain could finally be taken seriously. Once again, I could be recorded respect because there was something officially wrong with me: the machines said so! But once again, a tremendous amount of harm could have been avoided if only people had just listened to me from the get-go and had started working on my pain based on what I was telling them and not based on what they thought the machines were reporting.

It turns out that I'm one of those rare people whose pain receptors don't function in the same way as almost everyone else's. I have normal pain tolerance -- what makes you say "ow", makes me say "ow", too -- but I have really bizarre pain medication tolerance in that what provides relief for most people does nothing for me. We were finally able to stabilize me, according to my surgeon, by putting me on a level of narcotics that would "kill most grown men". And my surgeon might have known to expect that in advance if he'd taken note of my forty previous doctors who'd prescribed me pain medications and then marked me as either "Liar" or "Lunatic" when I reported that the pain pills weren't doing anything for me.

Isn't it odd, though, that this problem with pain medication has been something that has been with me for much of my adult life and yet wasn't with me during my early hospital visits as a child? That could indicate that the cause of my condition isn't genetic, but rather something that I accrued in my adult life. And it just so happens -- as an interesting little data point to throw out there -- that people with CFS may have a high correlation with strangely behaving pain receptors. Which is the sort of thing the Internal Medicine Guy might have wanted to know about before going into surgery.

But knowing about my history with pain medications and knowing about my issues with Chronic Fatigue Syndrome requires more than a fancy degree and expensive machines and shiny doctor coats. It requires listening and I'm still far from convinced that that particular trait is one that is in any kind of supply among the surgeons down here. I pray nightly that this surgery will help me and won't turn out to have been a huge waste and a big mistake. But we're not off to the best start so far.


Kerry said...

I'm so angry on your behalf I'm almost crying at work.

Ana Mardoll said...

Thank you. I've been in a pretty cheery mood for the most part since all this, you know, just trying to do my best to cope and deal, but this morning was the day I broke down crying while Husband was helping me dress after the shower. It's been a long journey, and none of this has made it easier. Mostly I bounce between a kind of "whatcha gonna do" attitude re: medical professionals and a really searing angry-sobbing.

I do know one thing: I'm *not* doing this a third time. I just don't think I have the straighten.

Maartje said...

Ugh, fuck the lot of them. Sure, of course someone who's just met you knows more about a body than the person who is LIVING in it! I wish they could all be sent to a desert island together so they could spend their lives not-listening to each other.

My medical-not-being-listened-to stories pale in comparison (had to unexpectedly stay overnight while I was promised to be let go after surgery) but I can't remember ever having been THAT angry. (Ah, I can - the time another doctor told me that of course that surgery didn't actually HELP because only backwards doctors from Belgium still believed in that mumbo-jumbo; seriously, what did I expect?) I can only imagine what you're going through.

Jedi-hugs, Ana.

Hyperio said...

That's awful. I am sorry you have to go through this.

In my opinion, ignoring patient's pain is bad practice - sometimes pain points to a problem that could end very badly if ignored. I know that doctors and nurses are often tired but some annoyance is better than a malpractice suit over someone's grave.

Maartje said...

Gah, by 'I can't remember ever having been that angry' I meant 'and that was the angriest I've ever been - everything is worse when the people not listening to you also get to poke you with sharp objects over your objections.'

RedSonja said...

I am crying at work for you right now. What a horrible, awful, and possibly worst of all UNNECESSARY experience. When my dad was hospitalized, we tried to have someone there at all times to be an advocate for him, but fortunately 1) there were 2 of us to share duties and 2) it was largely unnecessary. (Honestly, if you have the spoons for it, I think you have some actionable charges against the night nurse who refused to call your husband. That's complete and utter bullshit, as well as abdication of responsibility.) But regardless, I am glad you are back home with people who will LISTEN to you. I hope you feel improvement soon.

Aidan Bird said...

I am so furious at the medical system. You shouldn't have to go through this crud. Why can't they just listen?

You're not the only one that hasn't been listened to in the medical establishment - I also have been largely not listened to in nearly every encounter with a medical professional. It seems that the only way for a doctor to ever listen to me when something isn't quite right is if my body just gives out on me entirely. I am utterly convinced - and your story just serves as more proof - that doctors and nurses must go into "never listen to patients" training courses or else they have the least amount of empathy I've ever seen in a person. If you are assumed female, you always get it ten times worse.

I'm sending well-wishes your way and I hope things improve and that somehow and someway these awful medical people will grow a heart or two and learn that listening should be the number one priority in their profession.

Rakka said...

Oh fuck. That's absolutely horrifying neglect. I would probably have started screaming at that "nurse". (I hate the thought of surgery. At least a random robber who stabs you doesn't assume you're consenting and grateful to be stabbed. Brr.)

Rakka said...

Here's a happy gosling instead!

Ana Mardoll said...

It's dreadfully sad to me who many people seem to have identical stories to mine. It feels like the system is fundamentally broken in some kind of weird Stanford Prison Experiment systemic way. o.O

chris the cynic said...

I was going to say that I thought the not listening fuck ups were rare but they have a way of building on themselves to make catastrophe. Then I remembered my personal (not at all catastrophic) experience with not being listened to and now I'm thinking that maybe that's standard, it's just the case that most of the time it doesn't lead to things getting all that bad.

The worst that happened to me with not being listened to was that three years in a row I was given a once every ten years booster shot when, I shouldn't have had even one of them (a booster that I'd previously gotten from someone else hadn't worn off.)

So now I'm wondering it if just happens to everyone but most of the time the not listening simply leads to minor, forgettable, inconvenience. Either way, it need to be fixed. Preferably ten years ago or more.

Launcifer said...

I'm very sorry to hear you've had so many problems.

Then again, I've also stopped being surprised to hear the depths to which the medical profession - as a whole - will sink when it comes to actually listening to patients. My mum's had so many problems with the NHS down the years that it long ago stopped being horrifying, darkly funny or even disappointing. Now it just goes on the list of reasons I'm going to leave my country at the earliest opportunity and not come back.

To be honest, though, I've often thought that it's less about the system being broken - though it is, certainly over here - so much as it's about the arrogance that can come with a more detailed knowledge of a subject (or group of subjects) that will eventually impact upon everyone - and all the privileges that tend to go with that. It occasionally feels like there's a sense of entitlement that goes with knowing something most people don't. The police in my country are - somehow - even worse than doctors when it comes to exhibiting this particular attitude, however it's come about.

In conlusion: I'm still very sorry to hear that you've had such trouble down the years and, like others, glad you're back home where people will listen to you while you recover.

Asha said...

*sends internet hugs to Ana because of nothing useful to say but DAMN I want to give you hugs and cookies*

Asha said...

And people wonder why I have a phobia of going to the doctor. Right under my hatred of phones. Ugh.

Nathaniel said...

Words cannot express the sorrow and rage your words have produced in me. My grandfather is a doctor, and many people I know are involved in the medical community. To me, doctors have always been healers and relievers of suffering.

So to hear that these very same people who should be helping you are instead causing you so much pain you want to die on a regular basis, that they have harmed and warped your body through laziness and callous disregard makes my hands shake. While I don't intend to go to medical school, I do want to become a psycho-therapist. The thought of me causing this kind of needless suffering for my patients frightens me to the core.

The kind of circumstances that can give rise to this kind of thing needs to change. Last decade.

Lunch Meat said...


I don't know how other people do it, because I can't believe I'm alone in having these problems of being minimized and ignored.

You're definitely not. My mom has several different medical problems causing several different types of pain that are all, of course, attributed to her being fat and if she'd just walk more often, then everything would be all better. Out of all the specialists she's seen, she's had one or two doctors that have been helpful, patient, and listening. Just as one example, when she went into the hospital for a procedure, she tried to explain to the nurses what kind of diabetes she had (the not-insulin-dependent kind), and they told her of course they understood, not to worry. She woke up one day to see a nurse coming in to give her an insulin shot. If she'd been asleep, it could have been...bad.

Ana Mardoll said...

Thank you. The world needs good therapists; maybe stories like mine can help you in the future to know-from-experience that just because a doctor referred a patient to you as having a mental illness, doesn't mean she actually does. And maybe you'll be the person to finally listen to her for once. :)

redsixwing said...

Dear little fishies, Ana, I am so sorry they behaved like that. That is NOT OK to the extreme.

I cannot believe that you are alone in this, Ana; too many friends have told me similar stories, and my own experience agrees.

depizan said...


I have nothing more useful to say. My own experience with medical stuff - particularly hospital stays - hasn't been good, but not as bad as yours. I'm so sorry. :(

Thomas Keyton said...

*sends hugs*

I'm never sure what to say in these situations, but I'm so sorry you had to go through this.

CleverNamePending said...

Reading this post was absolutely heart breaking. I am so sorry that you have to go through all of this. I've seen doctors pull this sort of stuff before, and I wish I had some tactic of how to get them to listen beyond "Have a middle aged man in a suit" on hand, but honestly that's the only thing I've seen work, and even then.

Fenixmagic said...

Holy crap, I'm so sorry. I hope you're healing well now, and that there aren't any complications. I understand about not listening - it's not just you. Your stories reminded me (in so many ways) of how many times I've been failed by the system of doctors my insurance provides. I don't know if they would do better in a different type of system (I can't imagine the amount of paperwork that goes into processing treatment for insurance) but as it is, it has failed me repeatedly.

Before they realized I needed my gall bladder removed, I was in pain for a month. They told me that I had a urinary tract infection (I didn't,) and in a later visit that I had a sprained back. I was in such bad pain I couldn't stay still - I would alternate between sitting and standing, elevated BP, shallow breathing. I'm convinced they would have kept writing me off except for one kind ER doctor who took an ultrasound and referred me to the abdominal specialist, who took one look at it and said, "Can you come in for surgery tomorrow?"

When I had to have hernia surgery, the recovery nurse refused to give me anything but a pill even though my throat was so dry I couldn't swallow. She put an uncovered ice pack on the wound, and let me tell you that is an astronomical level of pain. I got out of there as soon as I could; if that's the level of care they offer, I think my dogs do a better job.

And on the childless not by choice thing - years ago I was told I had a weak pregnancy. They sent me home with pregnancy kit that included diapers and coupons. When I had my miscarriage, they made me do an internal ultrasound in a room filled with baby pictures, and a nurse who asked me how far along I was expecting.

There is so much pain in this world. Listening helps alleviate it. Thanks for sharing, and listening.

EdinburghEye said...

Oy. Ana, I am so angry and so sad and so horrified. I want to send you hugs or make you a soothing British cup of tea. Surgery is terrifying enough without adding THIS shitload of stuff on top of it.

Nina said...

Oh, Ana, I'm so sorry! *hugs* if you want them. I haven't had a bad "not listening" experience, but that's partly because I have been blessed with good health.

CN: pregnancy, children

I went to a birth center for my first baby (and am going to a birth center for my second now) because I had heard a lot of stories and just didn't trust the medical establishment to listen to me and respect my wishes on how I wanted to do labor and delivery. And I'm glad I did (and I'm immensely privileged that I had low risk pregnancies so I could) because the midwives listened to me and took me seriously. My husband was there to be an advocate for me, but he never needed to intervene because the midwives I worked with respected me. I'm sure plenty of women get that from hospital staff...but I've heard too many stories like yours to trust them.

Casus Belli said...

Dear Ana,
Being a doctor myself (in Canada, though), I'm feeling both angry and ashamed at what happened to you. Unfortunately, I can recognize a lot of the situations you describe, which can be explained "rationally" (ie, they can be explained by reasons unrelated to your specific case), but this in no way justifies what you had to go through. I sincerely hope there still are physicians and healthcare workers who still listen to the patient, and I sincerely hope they might be sent your way in the future. Would it be any consolation to know that your testimony will help me --and anyone I can talk to -- keep my impatience in check, empathize with my patients... and just listen. In the meantime, please receive all the hugs, if you want them.

Laiima said...

Ana, my gods, that story was infuriating and heartbreaking. All the hugs in the world.

Joanne said...

I too am angry on your behalf, Ana. Being stuck in the medical system sucks so hard, and its even more infuriating when it wouldn't have to be so bad if only people would listen and have compassion.

I know exactly what you mean about how fantastic it is to have proof that what you think is wrong is really wrong. I have two major medical conditions, fibromyalgia and melanoma. The fibromyalgia is a little atypical in that it doesn't come and go- I am always in pain. I can't remember what it feels like to not be in pain. I can't sleep or think, sometimes, for the pain, but then on the other hand I also can't prove that I'm even in pain at all. Getting doctors to believe me has been a decade-long struggle, one that I've basically given up on. I'm literally at a point where I'm not getting any treatment whatsoever for my pain- no medication, nothing- just because doctors don't care about it at all.

Melanoma, on the other hand, is something you can see under a microscope, so even though it doesn't hurt, doesn't affect my range of motion, isn't metastasized and is highly unlikely to ever make me feel ill let alone kill me, doctors take it very seriously. I get buckets of information and personalized care and biyearly exams that they insist I come in for, and whenever I have a biopsy they sit me down and explain exactly what they're doing and why. No one has ever suggested that my cancer might be all in my head, or that I might be creating it by worrying about it, or that I'd be fine if I'd just get regular, moderate exercise. Its absurd, the difference.

SherryH said...

Unbelievable. Not as in, "I don't believe you" but as in "I can't believe how messed up our medical system can be." Or rather, I wish I couldn't. I've personally experienced:

Arriving at the hospital just in time to watch a relative stop the nurses who were setting his mom up for a Tylenol enema, despite the fact that she was severely allergic to Tylenol and this fact was noted in her chart.

Listening to another relative, home on hospice care, ask someone (a relative who happened to be a nurse) not to mop with a particular cleaner, because it "bothered" her and be ignored. Said patient has serious and random inhalant allergies, and the cleaner fumes could have made her stop breathing. Not breathing would sure "bother" me!

Telling my doctor that I had occasional trouble breathing, but (in answer to his follow-up question) that I wouldn't say I experienced wheezing. He said, "Well, we'll just put down wheezing" and diagnosed me with asthma without any further investigation. Given my chronic high blood pressure, I'd have preferred a bit more checking...

Oh, and I wasn't there for this one, but my former husband is hyper-allergic to penicillin. He had to physically prevent a medical professional from giving him a prophylactic penicillin injection, despite the fact that the allergy was noted in his records AND he'd told the individual about it.

Sorry, I've gone and rambled on you. What I mean to say is, not listening does seem to be epidemic among the medical profession, and seems to be getting worse. And also, I'm so sorry all that happened to you. I'm sending gentle, healing internet hugs your way, if you want them.

Laiima said...

As I mentioned in a previous thread, I have some wonky pain receptor issues as well, and I've also been wondering for a year or so if I have CFS. I didn't realize there was a correlation. o.O

Marie Brennan said...

Holy Mary, Mother of God.

The sheer rage I felt on your behalf just reading this boggles me. To actually live through it? I can't even imagine. And now I want to go hug my doctor and thank him for listening to me when I talk, because it's a thing to be treasured.

I have a friend with the same pain-receptor issue you have. It isn't like this is an unknown thing. It should not take a genius to look at the data (data which INCLUDES the patient's own self-report, thank you very much) and see there's a problem.

kbeth said...

Oh, Ana, I'm so sorry you went through all that. That's absolutely awful, and I second the suggestion that you may have grounds for charges against some of the people involved (only if you feel up to it, of course). For years, I've been reading articles about how it's important for doctors to listen to patients (anecdotes, studies, newspaper articles), and it just amazes me that even after years of those coming out there are so many people who just don't get it. And that's not even getting into all the inefficiency and communication problems, which of course everyone knows about but no one ever thinks they contribute to. I'm reminded of the story about knee surgeries, how the rate of surgeons operating on the wrong knee went down dramatically once nurses started actually marking the knee to be operated on, instead of trusting that the surgeon would know what was going on -- on the one hand, it's discouraging that that didn't happen before, given how easy it sounds, but on the other hand, quite discouraging that it was necessary at all.

...Anyway, there was a point there, I'm not sure what it was, but. I hope your recovery goes more smoothly now, and I'm sure no one will begrudge you these rambly posts about your experience. Sending good thoughts your way!

Laiima said...

On the pregnancy thing, I'm coming at it from the other end. Childless by choice, Spouse had a vasectomy years ago. Beyond that, I inexplicably went through menopause 2 years ago. I'm a bit too young for it to be normal, so I'd kinda like to know why it happened, esp since there were side effects that I didn't know were possible, and they've completely changed my life.

But it's really creepy having to *tell* total strangers about my post-menopausal status whenever *anything* medical is going to happen, even though pregnancy wouldn't/shouldn't impact those things. And I knew all my life I *didn't* want kids, using 2-3 forms of contraception consistently -- believe me, I would *know* if I could be pregnant right now! And yet, like you say, no one will take my word for it unless I also say I'm post-menopausal. Which, frankly, is none of their business.

Back to the pain issue. Nowadays, I say, "I'm highly sensitive AND I have a low pain tolerance." But I was still surprised at how much I hurt after my recent colonoscopy. I mostly expect to have to just 'gut it out' because nobody hears what I'm saying about the pain, or takes me seriously.

And all of it is just exhausting, mentally and emotionally.

Jools said...

Ana, LTL here; I am so sorry that this happened to you. I wish we all had patient advocates for this reason. Doulas for surgery and other tough treatments.
My mom had the same thing happen with the IV when she had abdominal surgery. Now we all tell anyone who is going in for an operation, or actually the companion of someone having an operation, to Run The Line! All night long, no one thought to check it - until a nurse who is a friend of hers came in and took one look at her, then found a pool of liquid morphine soaking into the rug.
Another friend with a neurological condition was told by her GP that it was literally "all in her head", and then given meds that gave her nerve damage, and accused of being a pill seeker when she said it had gotten worse. Now she might get her disability benefits cut.
BTW my chronic neck and shoulder pain, migraines,

Silver Adept said...

Wow. I cannot fathom how and why medical professionals would continue to ignore what is clearly something wrong. Even if they believe it psychosomatic, they have a duty to get you to see someone that can help you. Gah. There's way too much wrong with the system when they can't even manage the Hippocratic Oath.

I'm very sorry you have to experience this, Ana. I hope that Egbert doctor you see from this point forward understands the need to listen, Listen, and LISTEN when someone is telling them something that is important.

Jools said...

(oops, let me try that again.)
... weight gain and fatigue led my psychiatrist (and don't even get me started on antidepressant licensing in different countries) to recommend a thyroid and iron test (but not EBV, as yet). I had to *cry* at the local NP to get them to take my damn blood. Cause clearly I am mentally ill.
Best best best wishes on a speedy recovery.

Naomi said...

This story made me go hot and cold with rage as I read it. UGH.

Rikalous said...

Holy crap. Hugs for Ana, and for Lunch Meat's mother, and for CleverNamePending's grandmother, and for Fenixmagic, and Joanne, andSherryH's relatives, and Laiima, and Jools, and everyone else who has had to deal with this shit.

Ana Mardoll said...

TW: Mental Illness Terminology

You know, I wrote this post for 2 reasons. One, so that people who have gone through this (and may yet go through this) know they aren't alone and they aren't necessarily "crazy" just because the doctors treat them like they are. Two, so that any doctors/nurses/etc. reading this can understand what it's like on the patient side when we're being treated this way.

(Well, and I guess a third reason: to get it all off my chest.)

I'm overwhelmed by the number of responses here from also-victims and people in the medical community all responding precisely how I'd hoped. Hugs for everyone else in the thread who has been victimized like this, and a cookie to all the medical people here who have vowed to not let this happen on their watch. This makes me fell like my experience wasn't a total waste if it ends up helping people.

Need to know said...

I was on 'stay with the patient' duty one night so a friend's husband could go home and feed pets/take shower/nap.

Being somewhat familiar with hospitals I took a sharpie and a piece of card stock and put a boldly lettered sign on the door.


An hour later I added-


Half an hour later I added-



At that point a nurse made a muttered aside to an aide about the sign. "Report what?"

I looked up and snarled "Report your inability to read the patient's chart and signs on her door. And, by the way- the patient has a profound hearing loss. I DON'T. What is your name, please?"

I sometimes consider there is a handy niche market for a person willing to be a patient's wingman in doctors offices and hospitals. Which is seventeen different kinds of wrong and infuriating. It should not require the full time presence of another adult to get medical staff to listen to the people they are treating.

Ana Mardoll said...

I'm laughing and crying right now. Deep and undying internet love in your direction, because that story is just perfect.

depizan said...

Good for you!

It should not require the full time presence of another adult to get medical staff to listen to the people they are treating.

And yet, it does. I'd be dead if my parents hadn't lived in my hospital room when I was hospitalized after I nearly died of Crohn's Disease (ruptured intestines are not a pleasant experience.) When they moved me out of ICU, I was moved to a floor of - apparently - no medical professionals at all. Where I promptly got seriously worse, and the fact that I was delirious and throwing up was ignored by the one nurse on the floor when my mom found her (no one answered the call button), so my mom went and got someone else from somewhere else (I was busy being delirious) and I was moved back to the ICU. Where I stayed until I was sent home over a month later. (I think the hospital didn't want to get sued for nearly killing me with lack of medical care)

I nearly died. (And came out of emergency surgery with an ostomy I didn't know they were planning.) And yet, I consider myself to have had a relatively good medical experience. At least they treated my pain, let my parents stay with me, let them bring me food, and fixed the fact that my intestines had ruptured and I had peritonitis. ... Which is the bare minimum of medical care. *sigh*

Randomosity said...

Hugs if you want them. Damn that's terrible. May the rest of your life be pain-free.

I've heard horror stories from one friend whose mother was left in a broken bed at her nursing home and another who could not find a doctor to test her thyroid despite turning out to have the same thyroid condition I have and armed with facts from various accredited web sites and from my symptoms and hers being nearly identical.

I hope to hell this isn't a backlash against the Internet and informed patients. There seems to be a long history of humans hating to be proven wrong about anything.

Marie Brennan said...

Came back to add that I second the people who said that you may indeed have grounds for some kind of suit against the hospital, if you decide to pursue it. I am in no way, shape, or form a medical or legal professional, but the whole "passing out from no blood pressure" bit makes it sound to me like they endangered your health by ignoring you for so long.

If nothing else, I'd like to post a link to this entry, if you don't mind it being shared; these stories need to be told.

Ana Mardoll said...

You're absolutely welcome to post a link anywhere -- I love love love link-backs because (as previously noted) I hope that the stuff I write will help someone somewhere. And exposure increases the chance that someone who needs to read this will find it.


As for actionableness... *sigh* There's a few major problems with that. The ICU night nurse against whom I have the strongest feelings of aggrievedness only interacted with me when no other witnesses were present, so it would be not only a "she-said/she-said" case, but a case where one of the parties was under the influence of drugs (they *were* medicating me, just not *enough*).

And I have to maintain good relations with the hospital because I'm nowhere near out of the woods on recovery, physical therapy, etc. I'll probably be on medication for my back pain for the rest of my life, and I'd just as soon it be this physician who at least doesn't think the pain is "all in my head" anymore. I'm not in a place where I can go "physician shopping" right now, and I never trust people to be objective when lawsuits get involved.

However. The hospital sent out a survey that might have been anonymous (it had an ID number, but there was a place for an "optional" name and phone number and I left those blank) and I described my experiences with the ICU night nurse as calmly and eloquently as I could. So I'm hoping the ICU* will get a nice audit when all this is said and done.


* I didn't find a place for this in the OP, but when Mom got down to the hospital and found out what was going on, she started firmly advocating that I be moved to PCU because I was literally afraid to be left with my ICU night nurse again, and because Husband could stay overnight in the PCU ward with me. (ICU = Intensive Care Unit; PCU = Progressive Care Unit. PCU had been downplayed to us in the tour as less good because the nurse-to-patient ratio is higher so they have 'less time' to treat patients.)

This was about the point where they'd finally figured out what dosages I needed, so I wasn't in ICU-level danger of dying or anything, and I frankly think that everyone in ICU was fed up with me at that point anyway -- my medicine bag was needing to be changed almost *constantly* because I was pressing the button like I was playing a timed video-game and since the dosage level was so high, there was a huge padlock on the IV bag receptacle and changing it was a huge hassle, so it didn't take much of Mom's fierce advocacy to get me down to PCU within the hour.

Ironically, the PCU nurses took *much* better care of me and were generally nicer and better people than the ICU nurses, possibly in part because I was the "serious case" on the floor there where in ICU I'd been one of the least serious cases (i.e., stable and not about to die). Or, of course, maybe PCU is where the nice nurses go. But it kind of reinforced my theory that people respect you more if there's something relatively "wrong" with you according to Someone In Charge.

Kay said...

I'm so sorry that happened to you. I've never experienced anything that bad, I spent most of my childhood having my symptoms ignored or downplayed. When I went to the doctor recently because I started getting migraines again, I was giddy for days afterwards that he actually gave me medication instead of wanting me to log symptoms or telling me I wasn't suffering enough to merit actual treatment. I really shouldn't be excited about something like that.

Niveau said...

De-lurking for the first time, that's how much this topic matters to me! It took me seven years to find someone who'd believe me when I said I was depressed - this, despite the fact that, on more than one occasion, I literally said "I think about killing myself every day" to medical professionals. Seven. Years. I'm not exactly surprised that they missed my Asperger's, even though they themselves pointed out some of the very stereotypically Aspie behaviours I exhibited during those appointments. So little listening, even to themselves!

Getting good care for my mental health has been a real challenge for me, but I've really lucked out in terms of care for my physical health. My GP is absolutely wonderful and truly understands what listening to a patient entails. I've also had some great luck with other doctors. One in particular diagnosed me with an allergy to a protein in milk when I was a baby (I outgrew it pretty quickly, thankfully) when every other doctor refused to listen to my mother. My experience with mental health is what makes me know my luck in getting good doctors was just that: luck.

I'm so sorry you've had so many horrible experiences, and that you've so little recourse against those who ignored you this most recent time. You know your own body better than anyone else, and the standard of care provided by medical professionals would really go up if they'd just acknowledge that fact.

Inquisitive Raven said...

I think I may need to link to this on my LJ.

Dear gods, that's awful. I haven't had anything quite that bad, but my PCP does seem to be prone to forgetting, or not checking things that I've told her on previous visits.

Despite going through major abdominal surgery twice, I've never had the problem you had convincing the nurses I wasn't pregnant. Maybe it's because the reason I needed the surgery kinda precluded me being pregnant. Fibroids will do that even when they aren't actually in the uterus. No, what I really didn't appreciate was the recovery room nurse who insisted that I was in pain because of the surgery when what was really bothering me was the total and complete lack of lower back support provided by the stretcher. The pain from the incision was minor compared to what my back was doing. I wanted a folded towel placed under my lower back, and she didn't seem capable of grasping that.

Amaryllis said...

Jesus Mary and Joseph what the hell.

I'm so sorry and angry that you had to go through that. And I don't know, either, when or how it became common knowledge that you have to have a healthy adult advocate in the hospital with you at all times, because you can't trust the staff to look after you. Something is just Wrong about that.

Will Wildman said...

I've had the experience of not being trusted by physicians on what seemed like fairly self-evident things (look, I don't care if your second x-ray doesn't show a break, the first doctor's x-ray clearly did and by the way does that look like a healthy foot on the end of my leg?) but it never got worse than irritatingly slow responses - somehow I imagined that in really serious situations they would take things more seriously, but it's becoming more and more obvious to me that I should not rely on that idea.

I am so sorry for you and for everyone who's endured this mistreatment.

JonathanPelikan said...

I literally don't have enough words, Ana. I'm so sorry that this happened to you, and everybody else who has suffered this frankly-bordering-on-criminal and certainly monstrously unethical 'care'. All I can do is, like you, hope other people help boost this signal and that healthcare professionals find this post.

Karen N said...

*HUGS* Your story made me want to storm the nearest hospital and force them to listen and then it made me very sad.
I have nothing wise or helpful or useful to contribute except that I feel for you and everyone confronted with such bureaucratic, unthinking cruelty. My mother would probably be alive today if someone, somewhere, of the many doctors she saw for the pain in her wrists and hands had bothered doing a simple blood test before her rheumatoid arthritis got so severe it ended up progressing to lymphoma.

cjmr said...

Sometimes it's not disbelief of the pain status of a patient that causes bad pain management/bedside care, but prejudice.

The son of a friend from high school was in a single vehicle accident that necessitated setting his nose, his cheekbone, and the orbit of his eye (in addition to keeping him in a coma until his brain swelling went down). Once he was awake, the medical staff was refusing to give him adequate pain control because 'as a young black man, he is more susceptible to drug addiction'. It took his mom and both grandmas advocating for him before they finally agreed he should have a pain pump he could activate himself, as needed, instead of the nurse administering it at fixed intervals.

jamie fritz said...

I had a similar experience with demands for a pregnancy test last year. Despite my repeated assurances that it was not possible for me to be pregnant. The demands took place in a surgicenter type setting with other patients nearby and easily within earshot. I felt like pooping in the sample cup instead, I was so angry.

I'm really sorry you went through that. Virtual guaranteed pain free hugs. That's why I was so upset when my PCP went into teaching, she listened to me. Now I have a new doctor who I am still training to understand that I am the best witness to my own experience.

graylor said...

Ana, I'm so sorry to hear about all of this crap. Sick people, people in pain, shouldn't have to deal with this. Okay, nobody should have to deal with it, but surgery has to be stressful enough without doctors striking off to do their own thing at the last minute, needless pain, and evil nurses. Jedi hugs if you want them.

Reading your story reminds me of my mother. She had strange, sharp, 'stomach' pains for decades. She was referred to a psychiatrist (which, given it was the sixties was sort of progressive, I guess), diagnosed with ulcers in the seventies/eighties, diagnosed with angina in the eighties (with complementary nitroglycerine tabs--exactly what someone without a heart condition needs), had her gall-bladder removed in the nineties, and diagnosed with acid reflux in the oughts. All for the same pain that never actually went away. (My nephew had very similar symtoms, also had needless gall-bladder surgery, and is now being treated for spasms in a duct or something with a side-effect of cheap anti-depressants--it's helping, anyway.) Oh, and then there was the time when Mom started having difficulty breathing through her nose. Endured many tests/x-rays/claustrophobia-inducing scans from several doctors, and still had no diagnosis. She switched to yet another doctor, who whipped out a light, looked up her nose, and said, "Oh, it's polyps. I can see them, I'll get you scheduled for surgery right away.". >.>

Mom never mentioned any evil nurses, but then everybody knows everybody here and usually at least one of her nurses turned out to be her second-cousin-once-removed's daughter-in-law or some such.

Jenna Moran said...

I'm sorry that happened. I hope that as a random miracle or coincidence, you wind up way off in the corner of the causal graph and by sheer luck nothing like this ever happens again.

Best wishes.

Lliira said...

While my experience has not yet been as bad as yours (knock on wood), I know whereof you speak.

Three doctors, for over a year, could not imagine that my feet were numb and I was exhausted because of back problems. One nice, but inexperienced, doctor thought it was a vitamin deficiency. One experienced and not nice doctor said it was that I needed to lose weight. (Not that it matters, but I'm on the low end of "overweight" for BMI, and in that group that would be called "normal weight" if doctors still used the BMI chart of the 1990s -- but of course BMI is bs anyway.) Or that maybe I was depressed. Yes, supposedly my feet were numb because I was depressed.

Finally my back gave out spectacularly and I ended up needing paramedics to take me to the hospital because I could not get myself off the floor. Pain: 10/10. They didn't get me in the computer for what my fiance says is about half an hour, but what I remember as at least an eternity, so I was completely alone for either half an hour or an eternity or both until he could come be with me. One of the nurses told me to smile. While I was sobbing from pain.

When my fiance came, he tracked down a nurse and dragged him back to my cot and demanded I be given pain medication. All the nurse was allowed to give me was ibuprofen, but at least someone finally woke up to the fact that I existed. He had to be forced to realize it by a man who could walk around and was not in pain, but it was still an improvement.

The doctor finally saw me and soon after, I was given multiple injections and percocet. They worked fast, and I could stop crying. The doctor came to see me again and said, "well, now you look human."

She was the doctor in charge. She didn't see me as looking human when I was in unbearable pain. No wonder no one else under her did.

I was treated very well by one person: the nurse's aid. She was tired and sweet and said it had been an awful night for everyone who worked there, but for me more than for them, she was sure.

After that, the doctor the emergency room sent me to didn't think an MRI was necessary. He sent me to get my foot x-rayed instead. I eventually ended up at a podiatrist who was aghast that no one along the line had sent me for an MRI for my back or realize that all my problems -- exhaustion, foot numbness and pain, everything -- were due to my back. And he said I needed surgery right away. I got the MRI, and the doctor I'd been sent to by the hospital said, oh wow, yep you need surgery.

Over a year of almost no one but my fiance believing there was a real problem. (Doctors were bad -- my parents were worse.) It's possible it could have been taken care of by physical therapy back then. Now I need part of my spine fused.

I think the combination of the drug war, the anti-science of BMI, anti-fat prejudice, and a broken system of paying for medical care all combine with sexism, classism, and racism to make the U.S. medical system a heinous mess. I'm just glad I'm white, that I have a cismale partner (also white), that we're both college-educated, and that I don't "look fat"to most people, even people in the medical profession. I can't imagine how terrible this would all be if I didn't have the privileges I do have.

Ana Mardoll said...

Ohmigod, I'm not sure how or in what universe that equals "not as bad" as my experiences, because that sounds horrific, but comparisons aside, ALL THE HUGS. o.O

storiteller said...

Yeegads. I'm sending this to my sister-in-law, who is currently training to be a nurse and potential patient advocate. I know she's a compassionate person, but I figure a story from the patient's perspective would probably be helpful for perspective.

My own experience is minor, but a variation on the same frustrating theme. I've had acne since I was an early teenager, so for about the last 15 years. For some reason, every single dermatologist seems to be a middle-aged male who thinks a young and then just young-looking female is getting hysterical. None of them have listened worth a damn or acknowledged that people are different. You know, because I don't notice how my skin reacts to things every single day of my life. I finally figured out the best way to manage it on my own via some deductive logic. (My skin cleared up when I lived in a place with extremely high levels of lime. It turns out that while most acne medications are acidic, my skin reacts extremely poorly to acidic treatments. In contrast, very basic pure liquid soap - Dr. Bronners' specifically - makes a world of difference. )

Although it far from excuses the lack of compassion you describe, I think the problem is certainly encouraged and exacerbated by how the medical profession trains and treats doctors. I suspect doctors are often trained not to listen to patients, but trust their own judgment and expertise. Then, when they reach the hospital or open their own practice, they're so overworked and busy due to the way the health care system is set up that they just need to get through as many patients as possible. Although private insurance in the U.S. definitely makes this much, much worse, it seems like the U.K. NHS has many of the same problems as well, according to Launcifer's description.

gingerandlime said...

I'm so sorry this happened to you (and continues to happen, because of course it goes beyond this one hospital experience). If you don't mind I'm delurking (like someone else above) to tell you my version. (Content note: infertility, menstrual issues.)

My mother listened to me when I was a teenager. She saw me pale and sweating in pain, she saw me bleeding for eight or nine days every month, and she did what she thought she was supposed to do -- she took me to a gynecologist. Who told me that periods hurt, and I should take some Aleve. Case closed.

I told every gynecologist I saw for the next fifteen years about the pain. They told me that periods hurt, and I should take some Aleve/ibuprofen/Tylenol/Midol/name another OTC pain reliever.

I thought I was just weak. I thought it was like this for everyone. I thought if there was really something wrong, surely the doctors would know.

Then I tried to get pregnant.

When I couldn't, suddenly my pain mattered. New doctors asked if I'd ever told anyone about it/been treated/been diagnosed. I didn't know whether to laugh or cry. It turned out I had fibroids both inside and outside my uterus, and since having them removed surgically the pain. Is. Gone. I lost so much time over fifteen years to pain. I'm grateful that they finally figured it out, but it's not like fibroids are hard to diagnose -- the doctor who finally found them gave me a funny look and said, "Well, you know you have fibroids, right?" Unlike Inquisitive Raven above, though, who seems to have had the same surgery, I did have to deal with the Pregnancy Police. In order to have the surgery I'd needed for years, but which was only important enough to diagnose when I found myself unable to get pregnant, I had to prove via blood test that I was not in fact already pregnant.

Ana Mardoll said...

Thank you for delurking and sharing that. I'm so sorry that happened to you. {{hugs}}

AdalynLeigh said...

I'm a trained medical professional. In our classes, over and over again, they said "listen." It was beaten into our heads. We were told about a 21yo who came in complaining of heart attack symptoms who was diagnosed with the flu and sent to the back. Fortunately the doctor asked about his history and realized his father and grandfather had both died in their twenties from a congenital heart condition. He died three times on the table before they were able to save him later that night, and he was almost sent home.

I remember my first day of clinicals. A girl came in from an accident with a broken pelvis. They rushed around, checked vitals and pushed drugs, stripped her down and put her under a blanket, IVs replaced, fingers stuck where fingers don't belong on a first meeting.

And then they vanished. Poof. Gone. This girl was left lying on the hospital bed alone with no idea what was going on. I went and sat with her and held her hand and asked her about her accident and herself and just generally chatted with her until someone finally came to get her for an X-ray. When they discovered she had a very rare break (only one fracture, usually there's multiple fractures in a pelvic break) they sent her home with crutches and told her to take some Ibuprofen and basically said "it's going to hurt you have to deal with it."

I was horrified. I still am. This was a very small hospital, very kind staff (to me), but they were so quick and abrupt with her she wandered out looking confused as hell and probably spent that night in horrible pain since she had left on morphine and didn't feel it all yet.

I have an undiagnosed problem causing positional tachycardia and hypotension. I've tried for YEARS to get it diagnosed. That with my tendency to lose feeling in my limbs and my constant exhaustion has meant I've spent hundreds of dollars, if not thousands, on doctors who don't listen. It's gotten to the point where I literally walk in and go "here's the deal. The other doctors haven't listened. But I'm sure YOU are a professional..." which gets them for one or two appointments before they default back to "iunno maybe you're just too underweight. Eat more." I eat plenty dammit. /ramble

Sorry for the length, this post really made me so sad for you, I just wanted to let you know some of us do still care and DO try our damndest to listen and get you the care you need.

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