Patients Aren’t Fakers: Doctor Bias is Killing Us

[medical trauma, stillbirth]

I’ve been banned on Twitter for standing up for patient rights, so I would appreciate anyone posting this on that platform.

The first time I recognized toxic medical culture was when I was pregnant with my first daughter. It was late 2002, and I was living with my husband in Portland, Oregon. I had a job as a paralegal, which came with really good health insurance. I know younger folks won’t believe this, but the amount I paid out of pocket for that medical insurance? $53 a month. My dental and vision was an additional $6.

I was excited to be pregnant and, like a lot of folks carrying a child for the first time, I was perhaps a little overly-fastidious about what I put into my body and how I took care of myself. It was the only time in my life I shopped at Whole Foods, for instance, paying more for organic kale shipped overnight from California than I could afford to spend on a week’s groceries now. I stayed entirely away from caffeine, which I likely couldn’t do now to save my life. I walked the three miles to work every day to keep in shape, but worried endlessly about whether I was inhaling too much exhaust because of it.

I didn’t smoke cigarettes, didn’t drink, didn’t do drugs. Not even weed. As some of you know, I spent some time in prison for heroin addiction in 1999-2000, but I’d managed to leave that life entirely behind after that.

However, this wasn’t enough for the midwifery team. Because of my past, they subjected me to random drug testing. It was, they said, for my own protection. It’s amazing what people with power over you will force you to do for your own protection, when they know you have no recourse. If I wouldn’t take the tests, they’d turn me into child protective services and I’d lose my baby before she was born.

It turned out my daughter had a heart defect that was incompatible with life. As I lay sobbing on the gurney, preparing to stillbirth my tiny baby, they had the fucking audacity to tell me my drug tests had come out clean.

I fucking know,” I sobbed, and they had the further audacity to look shocked and offended.

As if it was about them, in that moment. As if their feelings were the ones that mattered in that situation, when I was in extreme physical and emotional pain, and they had the highly-paid job of caring for me.

This scenario repeats itself in medical facilities all over the world, and especially (it seems) in the United States, where toxic medical culture is the third leading cause of death. Doctor bias—especially against people of color, women, and people with disabilities—has been shown to cause tens of thousands of medical mistakes that lead to permanent injury or death.

Medical providers don’t pay attention to these studies, or the ones that show that trusting your patients and allowing them to be equal partners in their care leads to much better outcomes. Quite the contrary: nurses and doctors often openly opine that a large portion of their patients are fakers and drug seekers. Any perusal of Twitter or Reddit will show them mocking their patients, and if you’ve ever known medical professionals personally, you know that cruelly mocking the folks who come to them for help is one of their favorite pastimes. They have all sorts of opinion articles on medical sites about how we’re all a bunch of fakers, too.

They sometimes use the “opioid crisis” as a reason to torture their patients, but the opioid crisis isn’t driven by prescriptions, and they should know that. In fact, decreasing prescriptions has increased overdoses.

That a large portion of patients could be fakers isn’t rational, especially in the U.S. Who has twenty grand to waste on an ER visit just because we want attention? Who has seven hours to sit in the waiting room just for fun? Anyone can get narcotics for $10 on the street, in a lot less time. You can get a massage or a sex worker for an hour for $60-$400 depending on where you go, and that attention is a lot more positive.

Not only is the “patients are all fakers and drug seekers” narrative not backed up by logic—it’s not supported by evidence. In fact, as I’ve pointed out above, THE OPPOSITE is true—people are regularly dismissed as fakers, then die because of it or are permanently injured. Those are just the worst cases, too. Pretty much everyone who has been to the ER or the doctor has a story of how they were dismissed. Most of us are able to eventually get a correct diagnosis…if we have the privilege of being able to continue self-advocating. But not all of us can, especially if we’re part of a marginalized group.

So many have suffered, and will continue to suffer, until we defeat this toxic medical culture.

The reason I think it’s proliferated, especially in the U.S., is because you generally have to have a certain level of privilege in order to afford the schooling to become a nurse or doctor, so you already are in danger of having a superiority complex. Add that to the fact that insurance companies and medical costs have made it very difficult to get treatment. Medical providers have a de facto monopoly: if they fuck you over, you have nowhere else to go. If you do have the privilege of getting a second opinion, they accuse you of doctor shopping or collecting diagnoses.

The second time I encountered toxic medical culture was when I was in active labor with Kid. My water broke after many hours of contractions. I had to be taken by ambulance to the ER because the ice storm of the century had hit Portland, leaving six inches of ice on the roads and sealed our car doors shut.

The midwife on duty, regardless, wanted to send me home because I was only dilated 4 cm. She had to relent, however, because there was no way to get home. Instead, she told me to stop vocalizing (I had opted to go completely unmedicated, and I was howling. It really helped). The entirety of her “care” was to tell me I was exaggerating my pain. “This is your time to rest, between contractions. Stop wasting your energy being dramatic.” I didn’t have the breath to tell her that there was no time between contractions. They were one after the other.

She went off duty, and a new midwife came on. The last one had refused to check my dilation again. This one did. I was at 9 ½, and started to push immediately. (Hey, Millennials: you know how much I paid for the ambulance ride, birth, and recovery? $45. FORTY-FIVE FUCKING DOLLARS. This was in 2004.)

Luckily, I haven’t had to go to the ER since then, though I have had my back pain dismissed repeatedly by primary care to the point where I’ve quit going to the doctor for it, and just take kratom for it instead. However, my mom has been suffering for years because doctors have refused to investigate or treat her issues. Most recently, she had a seizure at home, and my dad had given her (inept) CPR on the 911 operator’s instructions, when she quit breathing.

The EMTs had to strap her to a gurney and give her Ativan to get her to the ER, because she had post-seizure psychosis and thought they were trying to hurt her. The ER staff had, instead of trying to figure out why she had a seizure, given her a drug test, which came up positive for the Ativan, so they figured she must just be in there for drugs. Why this would be their go-to assumption defies logic or evidence, but these are the people they are dismissing as drug seekers: incredibly sick 65-year-old women.

My mom told shift after shift of medical staff, repeatedly (since they all asked her about pain), that she had pain at a level of 7 in her back, but they never gave her so much as an ibuprofen for the 30 hours she was in the hospital, nor did they investigate the cause of the pain. It wasn’t until months later her primary care doctor (who she’d had to wait months to see) found out my dad had broken one of her vertebrae with the CPR.

They’re still not helping her with it.

And the neurologist she saw recently for follow up on the seizure? He said it was a panic attack and spent their hour consult berating her. She came home in tears and went off her meds. She is refusing further treatment for the seizure she had.

This is medical care in the U.S. This is what we pay a large portion of our incomes for.

I have more anecdotal evidence, but this doesn’t need to be an exhaustive account. Pretty much everyone who has ever had a medical issue has anecdotal evidence. And, again, large-scale studies back up that people in legitimate pain and with legitimate health issues are constantly dismissed and misdiagnosed.

Medical professionals: get your fucking shit together. You’re bad at your jobs. (Except those of you who recognize and fight against this toxic culture. Thank you. That can’t be easy.)

 

Official announcement and publication story: TALES FROM PURGATORY!!

Well, the time has finally come to announce this: I’ve signed a three-book contract with Scarsdale Press for the Tales from Purgatory series. Yay! The publication dates aren’t set yet, but if everything goes as planned, the first book should come out sometime in the autumn of 2020, with the next two to come out shortly after, in succession.

If you’ve been following me a while, you know that this is a 7-book series; you also might know that the series takes a very untraditional turn in Book 4, and then becomes more of a spinoff of the first three books in installments 5-7. I felt it was more appropriate to start with the first three with an option for the rest. Fear not, however; Persephone Cavanaugh will see the light of day, though the manner of it may surprise even some of those who have read all the books.

[CN: abuse]

This series has been a long time coming. It has, as they say, been a rollercoaster. Tales from Purgatory was the very first series I wrote; the very first books I wrote. The idea for it had grown in my mind over a decade, spawned by a psychotic experience I’d had on my 27th birthday. I somehow processed my visions of being dead and transported into the dimension of Purgatory, where spirits gave me messages in code designed to lead me astray or toward the light if I could decipher them correctly, into a YA urban fantasy about a runaway who holes up with a cult of rogue scientists who think lucid dreaming can allow passage to the afterlife and beyond.

After a couple of false starts, I finally started writing this series in the late summer of 2013. It was a strange period of my life. I had just moved to California with my husband and daughter. After years of supporting him emotionally through his postdocs, my husband had finally gotten a tenure-track position…in the one school I’d told him not to apply at—one that would require us to move to one of the most expensive areas of the country.

We ended up living in a hotel room for months, trying to close on a house. I was homeschooling my daughter, and feeling completely uprooted from my family, friends, bands, job…everything I’d ever known. So, I started to write.

I couldn’t stop writing. Part of it was the story, maybe, and part of it was the fact that the weather on the California coast went from summer to spring with no downtime in between, no cold, dark teatime of the soul as it were. I went manic and hyperfocused, writing 12-18 hours a day, having to dose myself with whiskey and antihistamines to even catch a few hours of sleep so I could function well enough to write the next day. Writing was pretty much all I cared about. I could taste the story, and couldn’t calm down unless I was sitting in front of my much-abused laptop in some quiet place or other.

It was difficult, sometimes, to find those quiet places. My husband didn’t like me writing so much. He thought I was wasting my time, and advised me to get a minimum wage job working in the grape fields…anything, he reasoned, would be better than writing. Better than the one thing I’d ever felt destined to do.

So, Juniper and I went on road trips. We went to stay with my parents for a while. Finally, we were able to move into a little house in a tiny town called Shandon, California. It’s there that my life changed forever, and took a definite turn for the weird, as most of you know.

It took me almost exactly a year to draft all seven books in the series. That year was a crash course in how to write. I joined five different writing groups, much the way I’d joined five different bands back in Seattle. I joined online pitching contests and took courses in how to write queries.

I started pitching Book One of Tales from Purgatory way too early—when it had only been drafted for a few months. Working on writing as many hours as I was, I’d still gotten feedback from critiquers and beta readers and managed to edit it several times (while working on the sequels), but I still didn’t really know how to write. I hadn’t found my style or my footing yet.

I’m glad I pitched it early, though. It gave me the experience I needed in order to get my first book deal with Love or Money (which was the thirteenth book I wrote), with The Other Place series (books 8-12 in my list) following soon after.

This publishing deal came during a very tumultuous time, when I really needed something good to hold on to. My husband, once we were settled in California and he was doing well in his job, decided he didn’t need me anymore and, as he said, was only keeping me around so he could see my daughter (who isn’t his biological daughter, but he’d been her stepdad since she was two). I was very much adrift, and a book deal was a life raft: a sign that I could make it on my own, that I had value as an individual and not just as the supportive wife of a successful biophysicist.

I finally left him and moved back to my hometown in eastern Washington State in the spring of 2016. That’s when the real work began, both career-wise, and emotionally.

During that first, windy April, I renovated a one-room cabin on my family’s farm. I dug into the cold earth and planted a huge vegetable garden, sprayed and pruned acres of peach trees, and tried to come to terms with myself. I’ve been living in that cabin since then, trying to build up my writing and editing business and grow the farm’s income.

This is the first time I’ve ever been on my own. Building my identity as an individual and learning how to take care of myself has been a real struggle. I’ve wanted to give up so many times: on my dreams and on myself.

The thing about trying to make it as an author and freelancer is, there’s no stability, no guarantees. I’m lucky that I have a place to live and food to eat; my daughter and I will never go homeless and hungry here. But I can’t shake the feeling that I have something to prove. No matter how hard it gets, I can’t bring myself to fall back on my family’s support. I’ve had too many abusive partners who have assured me they’d take care of me if I gave up or deferred my own dreams in order to support theirs, only to crap out on that promise or discard me as soon as they’d achieved their goals.

For the first time in my life, I need to stand on my own two feet. And I’d really like to do it on my own terms, doing something I love.

Month after month of barely scraping by really wears on a person’s nerves, though. I’ve applied for regular jobs dozens of times, but nothing has panned out, as if the universe itself wants me to be poor. My self-doubt started to crush me, and my pace of writing slowed, my focus shattered. I couldn’t finish a novel. I’d get halfway in and lose interest to the point it was painful to open the manuscript. I’d start on something else, only to have the same thing happen.

I quit querying, and quit marketing my books. It all seemed like too much, the tasks and to-dos nagging at my conscience, failure sitting on my chest like a boulder. I always knew that making it in the arts can be a slog, that it’s a job, and that you have to keep working at it. I never expected that I would get a few books published and they’d take off on their own without me putting any more work into it. But I’d lost my nerve.

I never stopped loving to write though, and I never gave up on Tales from Purgatory. I wanted so much to recapture the feeling I’d had while working on that series: the complete immersion in the story, the exhilaration of creating a new world. I’d still open the document every so often and make more revisions, and I found a very good new beta reader who gave me some excellent suggestions.

Then, last March, I decided to pitch Tales from Purgatory in PitMad (the same contest which had netted me my first publishing deal). I got a request, sent off a partial to Scarsdale Press, and promptly forgot about it.

I didn’t send out any more queries. I was in a complete funk and immersed myself in the farm and in anything else I could find that might make me a few dollars, working on my manuscripts in fits and starts without much enthusiasm.

Then, a couple weeks ago, I got a request for the full manuscript from Scarsdale. They apologized; apparently my pitch had been misplaced.

A few days later, I had an offer.

I’m really happy this story is going to be out in the world. It’s my favorite one I’ve written so far. Even with all the editing, I think I’ve preserved the initial spark that drove me to write it. The pure joy of discovering what it means to be master of your own written universe, the euphoria of feeling that magic inside yourself.

The editor who took it on has more excellent ideas for revisions. Her initial letter of offer showed her dedication to the story, and made me feel like I had, finally, found someone in the business who saw my vision and appreciated it for what it is. I’m excited to see the finished product.

I wrote these books before I had come to terms with my neurodivergence. Before I knew Phoenix. Before the crash that turned my life on its heels. But it still has a schizophrenic character and deals with processing of abuse. It holds the seeds of my self-discovery, before they became entangled with identity and politics.

I hope that you all will buy it and love it as much as I do.