The Purposeful Misdiagnosis of American Women

A couple of weeks ago, I wrote an article for AC about my first-person account with a purposeful and neglectful medical misdiagnosis. Within in just moments of publishing the article, Purposeful Misdiagnosis, my email inbox was full with accounts from all across the United States, and two from Canada, telling me of their misdiagnosis as well.

One woman was told that her chronic iron deficiency was "no big deal" even though iron deficiency has clearly shown to tear down an immune system. My friend with this fairly common issue continually insisted that her doctor discover the cause for the deficiency of one of the human body's most necessary nutrients. Again, she was basically ignored, told that the problem was not a serious one. In the meantime, her immune system began to fail her, to work sub par to defend her body against foreign invaders. Her leg became infected and she has had to replace a good portion of her bone with a metal rod. I want to ask her doctor if iron deficiency is still "no big deal". Statistics, from the American Medical Association to Wikepedia, confirm this truth - that a continual lack of sufficient iron in the female body can cause a significant drop in the amount of white cells that are used by our immune system to fight of even basic infections. I know. This is my story as well. Due to my own iron deficiency, I catch everything that comes along, from the common cold to a shingles attack that will not respond to antiviral medications. This should not happen to a 33 year old woman in a developed nation that claims the world's greatest health care, but my idiopathic (of unknown cause) chronic iron deficiency leaves me ill a lot. Thank God my doctor considers it a big deal, and is doing his best to help me treat it regularly.

Another friend emailed my personal email to let me know how much my article had encouraged her, that she was not alone anymore. A few months ago, she began to complain of vertigo and constant ringing in the ears. It only got worse. Before long, she went to the doctor, as it was beginning to interfere with her daily activities. The doctor "politely" told her it was all in her head. A heart-attack later, a different doctor discovered a hole in her heart.

I received more than one email containing the words "vertigo and ringing in the ears". I had this issue last year, shortly after I was coming to terms with the purposeful misdiagnosis of multiple sclerosis. I went to my primary physician, and he sent me for a battery of simple tests for a benign, common disorder called BPPV (benign paroxysmal positional vertigo). It is described by the Vestibular Disorders Association as -

"...a disorder that causes vertigo, dizziness, and other symptoms due to debris that has collected within a part of the inner ear. This debris, called otoconia, is made up of small crystals of calcium carbonate (sometimes referred to colloquially as "ear rocks"). With head movement, the displaced otoconia shift, sending false signals to the brain."

After all the tests were completed, about two visits to the hospital diagnostic center, it was determined that I did not have this very common disorder, but rather, my occasional severe vertigo was caused by migraines and migraine auras. However, all the friends who have emailed me with the very symptoms of this condition had never heard of it, had never had it mentioned to them by their doctors. It would seem to me, that it would be make more sense, not to mention - be much more compassionate and polite, to consider testing for this benign issue before calling a woman crazy by suggesting the very irritating symptoms she is experiencing is "all in her head".

I received emails from women telling me how they had been called crazy before they dumped their present physicians for one that correctly diagnosed them with RSD, Muscular Dystrophy, Macular Degeneration, Pernicious Anemia, Cancer (several forms - in fact, the late Gilda Radnor was told more than once that she was simply experiencing common ovulation pain before she died only a short time later from ovarian cancer). I was in the ER just a week ago with what I thought was the world's worst migraine that would not go away despite my usual migraine meds and a steroid taper. A very thoughtful female physicians assistant told me she believed I had shingles pain.

"You pain is traveling directly along the nerve line," she said. And she ran her finger along the line of my pain, making sense of it. She sent me home with the correct meds, even though I did not have the blisters. "They were probably masked by the steroids," she said. Later, I remembered a very small cluster of blisters that had come and went a week earlier, and new ones have recently broken out, but the PA was willing to believe me, even in the absence of all the typical signs of shingles. When the pain grew worse, and I returned to the same ER, I had to defend myself, while in the midst of excruciating pain, because the male physician did not see evidence of blisters. My husband had to point out the scars and newly forming ones before he believed me. Common story for me. I never go to the doctor without a man, without my husband to shake the male doctor from his "women are crazy" stupor.

I am still getting these emails, phone calls, and in-person accounts of women who have been sidelined by modern medicine, simply because they are women who have long been taught to be kind, be quiet, behave when their doctors claim to know what they are talking about. But if there is one thing that I have learned through my own experience (see my article at AC Purposeful Misdiagnosis), it is that people have to take their own health care into their hands, especially women.

When I was in labor with my first baby, I was only a few months away from recovering from complete paralyzation from Gillian-Barre Syndrome. People with this disease are NOT supposed to receive spinals. Granted the disease itself is one of the rarest in the world, but I knew what my neurologist had told me, and I was prepared to heed his warning. But, of course, when I was told the spinal was coming after I had suffered already 16 hours in labor, I complained, stating that I would rather have an epidural. I was told to be quiet, that my doctor knew what was best. It made me excessively weak, and almost too fatigued to care for my newborn, and it had completely worn off by the time I gave birth almost nine hours later. It would take me many more years to learn my lesson of personal responsibility. Because this is what proactive health care is. It is taking your own gut-feeling, your own ability to research, your own care into your hands, and walking confidently into the doctor's office knowing when to move forward with your doctor and when to fire him completely.

Women know when something is wrong with them. They can sense that hormones are about on the verge of change from month to month. They often know when they are pregnant even before the tiny little $20.00 box test strip tells them the obvious. They know that the headaches they are experiencing are far worse than the normal tension headaches they get at work or after their three year old has thrown the fourth tantrum of the day. Women are not the naturally weak, naive maidens of a Victorian novel. They are mothers, wives, professionals, and for centuries, we have birthed babies on our own, healed whole villages with our herbal and natural medicinal knowledge, and most of us can sustain a significant amount of pain and suffering before we even open our mouths about it. In short, women have a knack for being women, to be keen on caring, but we so trained ourselves in the 20th century to allow our doctors to take over that area of our instinct, and we have left that portion of ourselves sleep dormant for the 21st century.

I have no doubts that whenever I recirculate my previous article to women, I will get a fresh collection of sad stories in my inbox. "My doctor told me my disease was all in my head, too!" I just hope I never receive that email from a husband or a child telling me that the discovery of a medical misdiagnosis was too late.

I tried getting some direct statistics on this trend in American medicine, but naturally, all voices grow mute when it is asked of them, "So how often do you believe women in the United States are misdiagnosed and prescribed drugs for a disease or condition that they do not have?"

It's a sad state that needs changing. I suggest that every woman in this situation start making their needs clear and not wait for politicians to bring up the issue and offer false promises, because they probably have been told by the medically powerful that such a crisis is "all in the head" of lonely women everywhere. I think it's time to make some doctors very lonely and to reward the ones who are truly doing their jobs well.