My story is a series of many incidents with physicians that impinged upon my dignity and autonomy as a person, not just as patient. The most egregious abuser was my former primary care physician, Osteopath 1 in Long Beach, CA who used to regularly “offer” to give me a pelvic exam every time I saw him for an office visit which was typically not for an exam but only for a referral to a specialist.

As a toddler, I was perpetually too small for my age and was sent to specialists to uncover any underlying problems. They told my parents I wouldn’t hit five feet (but I showed them! I’m 5 1 ¾). I was in and out of the hospital with pneumonia multiple times. I had a blocked tear duct that caused me to wake up with my eye glued shut every morning and had to have surgery. All before age 5.

There was a recent article in Cosmopolitan entitled Doctors Told Her She Was Just Fat. She Actually Had Cancer by the incomparable Maya Dusenbery. I recommend you read it. It's chilling. 

But that article led me to discovering something else. There's a website devoted to essentially the same topic that we are, except as to how it relates to fat people (usually women). I use the term fat because that is the term the site uses. The blog is called "First Do No Harm" and they have quite a bit of resources on the topic including studies showing that doctors do, in fact, discriminate against fat people. (Is that shocking? Not one bit.)

My mom passed away in 1997 when I was 13 years old. It was very unexpected and traumatic on me, as I had been an only child and very close to my mom. She had devoted her life to parenting & raising me after she divorced my dad when I was 2 years old. It was always her & I against the world after that point and she was my closest friend as well as being an amazing mother.

Before her death, around the time I was about 11 or so, she developed a medical issue. I only understand it to the level I do based on her writings in her diaries, which I have & kept since her passing. She did an amazing job hiding from me her levels of pain and her struggle with the condition she developed. In her journal she wrote that she didn't want to worry me.

I was misdiagnosed as bipolar as a teenager, the after effects of this still haunt to me to this day.

Let me go back a bit here first though to explain how I got there. As a young child and again as a preteen I was raped by an adult who was close to me. I never disclosed this information to anyone for my sanity, and yet not doing so would eventually steal it away anyways.

By 13 though, I was broken beyond repair I felt. So I began to cut at myself. That was the first mistake I made. I was truly tired of feeling the same trauma pain over and over, I just wanted to feel something else. I was numb and I wanted to feel alive again. Yet it still was a stupid mistake, the first of many many more.

Market Watch interviewed Lent Hirsch, author of the new book, “Invisible: How Young Women with Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine,” which came out late last month.

From the article:

"Statistics show that young women are disproportionately affected by certain diseases and health conditions, she says — and that’s hard enough.

I started this blog a couple of years ago because I was tired of doctors treating me like some sort of criminal for seeking treatment for my symptoms. After years of going to doctor after doctor who told me my symptoms were all in my head I was finally diagnosed with lupus. As someone desperate for relief from extreme bouts of fatigue that stopped me from living my life, the attitude from doctors that somehow I wanted to be sick was infuriating.  

In 2002 when I was 18, I became pregnant with my son. That was when the problems first started. I was very sick throughout the pregnancy, and I became housebound fairly early into it after needing to quit my job as a server at a restaurant because the smells of the food made me ill & left me feeling on the verge of vomiting. It was also during this time the normal energy I once had seemed to disappear. I'm not sure if the hormone changes during pregnancy triggered this problem to begin or what. All I know is that to this day, now 16 years later (& many years past even my most recent pregnancy with my daughter in 2011) I'm still struggling with this unexplained exhaustion. I'll admit it hasn't been a constant, unrelenting thing for the past 16 years. I experience some good days, sometimes even weeks, & occasionally full months if I'm really lucky where I actually feel like I have somewhere near "normal" energy levels that are on par with many other people. I've never had even a full year of being "normal" however, since 2002.

The week after my thirty-first birthday, I developed an infection in my left lung and ear. At the time, I was working for the largest medical system in the state of South Carolina. I’ve had asthma and allergies since age three, so lung and ear infections are nothing new for me.

Katie Ernst, the person behind this blog, appeared on The Empowered Patient Podcast to talk about bias in medicine. It's a fun discussion (as fun as a discussion about women dying from doctors not taking them seriously can be). Check it out!

My story started about 3 1/2 yrs ago when I woke up so tired I couldn't open my eyes. I was falling asleep while brushing my teeth and ended up late to work because I fell back to sleep. Thinking I was getting sick, I did what most do and drugged myself up hoping it would soon pass.

When I was in my 20s I was involved in a car accident and thrown out the windshield approximately 25 ft. Cars had no seat belts in those days. I was knocked out, and taken to the hospital. Xrays were done, which showed a possible small skull fracture but no other injuries.My neck was very sore. They wanted to admit me, but I left against medical advice.There was no such thing as scans or MRIs in those days.

If you haven't seen Aubrey Hirsch's cartoon depiction of her story of not being taken seriously by doctors, you have to see it. Every woman who's had any sort of interaction with the medical profession will relate. This story is far far too common. (As the stories shared on this blog makes clear, of course.)

 I was diagnosed with lupus around the age of 19, and I can honestly say that the process of actually getting a diagnosis from a doctor was harder on me emotionally than the diagnosis itself.

"Oh!" the gynaecologist exclaimed. She lowered the speculum as I raised myself on my elbows, the better to look at her. "You're very well informed!" A raised eyebrow, a smirk playing on her lips. Of course I am, I said. It's my body, and I know it better than anyone else. I placed my hands under my bum and lifted slightly, the way the Nurse Practitioner had shown me last year. I found out I have a tilted cervix at 24 years old - I found out at my first smear test, last June. After 14 years of periods, of examinations, of seeing various doctors for contraception, and not one of them had told me that I have a tilted cervix. Years of painful sex and tampon insertion, and not knowing the reason why.  

I don't remember when the constant pain and exhaustion started, but I remember a day in graduate school where the thought of walking upstairs to my second floor apartment was so daunting that I slept in my car.  It was below freezing and very snowy that day, so this wasn't a decision that I took lightly.   

Over the last, oh gosh, nearly a year now it's been a roller coaster of life events that do have me depressed, and I have had depression since I was very young so its nothing new to me.

Many doctors act as if their primary job is to push medication at patients while taking time to listen to them is a luxury they can't afford. The dozens of women who have shared their stories on this blog show the problems this sort of mindset creates. It doesn't help a patient to shove the wrong drugs at them because you didn't listen to their symptoms and properly diagnose their condition.

A woman’s life is painful.  Bras hurt, heels hurt, too tight jeans that we feel compelled to wear hurt.  Cramps, childbirth, post-partum recovery, menopause all hurt.  Sexism hurts.  Sexual harassment, misogyny, microaggressions hurt.

For the past 13 years, I have been completely exhausted. What happened 13 years ago, you ask? My second child was born. You guessed it, I was told that I was a new mom and that this “tiredness” (which physically took my breath away) was normal. But I knew that this “tiredness” was somehow different than any other “tiredness” I had experienced. Could it have been a mix of postpartum depression and lack of sleep? It’s possible. I don’t blame the doctors for thinking that.

I could fill a bookshelf with the lousy treatment I have received from doctors.

It took 20 years for me to get a Graves Disease diagnosis. Meanwhile, my thyroid grew and grew, until it extended from behind my ears at chin level down to the end of my sternum. The surgery to remove it took double the normal time for that surgery.

I too have been told by a doctor that I was malingering when in fact I wasn't. I have never had a cavity or even a broken bone. I take great care of myself and I have never used drugs or smoked. I have had less than five alcoholic drinks in my entire life. My personal and professional background is excellent with no criminal background. I have always been a hard worker and extremely reliable as a mother, wife and employee.

A little over a month ago I found myself in the emergency room due to what everyone keeps saying is a "Urinary Tract Infection". I was rushed through by very nice female nurses who took into consideration the amount of pain I was in, the fact I have never had a UTI before, and the fact I have had problems with kidney stones in the past. 

Over the last, oh gosh, nearly a year now it's been a roller coaster of life events that do have me depressed, and I have had depression since I was very young so it's nothing new to me.

Last month I mused in an article that there is a need for healthcare professionals whose job it would be to advocate for women who are not being taken seriously by doctors. In the comments section a reader let me know that there actually is such a thing, she'd hired one, and she could put me in contact with her. I jumped on the opportunity, and what follows is what I learned from Lora McCann, a professional personal healthcare advocate.  

I was sick from about age 10. Doctors said it was growing pains, then as I got older said it was my "life change" and I was simply unable to cope with the pain but I'd get "used to it".

The British Medical Journal published a study this week showing that medical error is the third leading cause of death in the United States. Think about this for a moment: You are more likely to die from medical error than lung cancer, firearms or a motor vehicle accident combined. The study is based on an analysis of data looking at hospital inpatients among medicare patients and extrapolating these findings out to the population at large. That is, this does not even capture medical errors that occur in an outpatient setting. The example given in the study was a woman who died because of a doctor who mistakenly grazed her liver with a needle when attempting to do a test on her heart.