bias…

When I was 17 years old, I did a three week foreign exchange program with a girl my age in France. While I was visiting her, I came down with a stomach bug and her family took me to see a doctor. I explained my symptoms to the cute French doctor while he checked my vitals. After a few minutes of questions, the doctor asked if my symptoms might be “due to the masturbation.”

Now, I don’t remember if I engaged in that particular activity at the age of 17 or not. If I did, I certainly didn’t do it in other people’s houses, or in foreign countries. Everyone knows there’s nothing sexier than the good ol’ US of A, and you probably have to go counter-clockwise in foreign countries, anyway. Too much work.

I also wasn’t an idiot and knew that masturbation didn’t cause stomach bugs. When I explained to the doctor that I was pretty sure it wasn’t caused by touching myself, he turned the brightest shade of red I have ever seen in a human being. Turns out he was trying to say “menstruation”, but his English wasn’t great.

I would love to tell you that was the last time a doctor tried to blame symptoms on my period. Thankfully, it was the last time a doctor mentioned the word “masturbation” to me.

After recent conversations with some chronically ill (female) friends, I have been reading up on the statistics of patients with postural orthostatic tachycardia syndrome (POTS) who were initially diagnosed with anxiety, depression, or were told they were psychosomatic. According to a study conducted by Dysautonomia International, over 50% were initially diagnosed with depression, over 55% were told it was “all in their head”, and nearly 70% were misdiagnosed with anxiety.

I pride myself with never having been diagnosed with anxiety or depression, or told it was all in my head. I shouldn’t – the POTS symptoms of those included in the statistics above are just as real as mine, and my lack of misdiagnosis says more about the quality of doctors I have seen than it does about something I have done. But I have been told vomiting multiple times per day over the course of six months was just stress, asthma was just my way of showing my parents I liked boys and didn’t want to play sports anymore (I was 13), and a string of eye infections was just “makeup”, whatever that means.

To be clear, there is absolutely nothing wrong with having a diagnosis of anxiety or depression. There is something seriously wrong with being told it’s “all in your head”, but hopefully that goes without saying. I have loved ones with both anxiety and depression, some severe. My fear of being diagnosed with anxiety or depression has nothing to do with the diagnosis itself or the unfortunate stigma that still surrounds both and needs to be rectified. I’m afraid of a misdiagnosis of anxiety or depression or stress because 10 years ago when I first started experiencing POTS symptoms, I would have reluctantly accepted the diagnosis. I wouldn’t have pushed back, and would have waited much longer for the POTS diagnosis. I was young and naive and had never heard of POTS and believed all doctors knew more than I. And while I’m kind of an ass now and would certainly push back, chalking up my illnesses to anxiety or depression or stress makes me afraid for young women who, like me 10 years ago, would simply accept it.

If you are female, there is a higher likelihood that you will be told your symptoms are due to anxiety, depression, or are all in your head than if you were male. Or it’s stress. Maybe your boobs are causing it. I have a few female POTS friends who were told that they were just seeking attention and should find a boyfriend/husband to provide said attention. Pretty sure no doctor ever told a man complaining of chest pain and shortness of breath that he just needed to find a wife.

Apparently there’s something in women that makes us fabricate illnesses. It’s probably the uterus.

The bias against women in the health care industry is still very real. As an attorney, the state of California requires that I (and all other attorneys) undergo training in eliminating gender and racial biases in the legal profession as part of my continuing legal education courses. I sincerely hope doctors are required to attend similar instruction on biases in medicine.

I have grown from the young, naive woman I was 10 years ago, in part due to age, but also due to the experience that only 10 years of regular health care visits can provide. I’d like to share what has worked for me in getting doctors to take me seriously.

1. Female doctors. Where possible, I always request a female doctor these days. Some of my favorite doctors are men, like my POTS cardiologist, so I’m not opposed to male doctors. But sometimes it helps to see someone who has all the same body parts and functions as you. Studies show female doctors are less likely to suggest your symptoms could be psychosomatic, are more compassionate, and I’m willing to get they aren’t going to insist that your heart palpitations and leg pain are due to your menstruation. Bonus: it doesn’t make you super uncomfortable when they say “menstruation”, or for that matter, “masturbation”.
2. Dress confidently. After the initial appointment with a new doctor I might show up in yoga pants, but for that first appointment I feel more confident in work clothes. And, I’m less likely to take shit from anyone when I’m wearing a cute suit. It’s my “superhero cape”. Maybe your “superhero cape” is literally a superhero cape. Wear something that makes you comfortable standing up for yourself, whatever that is.
3. Bring information. If you suspect your symptoms may be caused by something in particular, bring in information, preferably journal articles or other reliable information, that supports your theory. At my first neurologist appointment, I brought journal articles about the prevalence of small fiber neuropathy in POTS just in case the neurologist claimed I was too young to have SFN. Fortunately, he was familiar with POTS and aware of the correlation.
4. Try to remain calm. I loathe appointments with new doctors. For some reason they make me nervous, probably because I’m always expecting to have my concerns dismissed. I also hate being interrupted, and every doctor on the planet interrupts you at least a dozen times during a 10 minute appointment. I try to present my concerns in a logical fashion: here are my symptoms, here are concrete examples of how they are interfering with my life, and I’d really like to be able to get back to working/exercising/eating without vomiting/etc. I often joke around with the doctor a little, too.
5. Pain scale. I’m going to anger a few people with this one, but if I’m in pain, I always use caution when answering the question of pain level on a 1-10 scale. If I’m able to sit still and calmly answer that my pain is a 10, it’s not a 10, and anything I say after that is not going to be taken seriously. If I’m not screaming bloody murder, it’s not a 10. In fact, I have never answered the question with a “10”, because it could always be worse.
6. Bring support. Bringing a friend, parent, child, relative, or significant other to an appointment can help confirm your concerns and provide support. I think it’s human nature to be a little more compassionate once we see a person as the parent, child spouse, or friend of someone who is concerned for your well being.

This applies in life as much as health care, but don’t ever let someone make you feel like what you’re experiencing isn’t valid because you’re a woman. One day health care will view us equally and we won’t be told ridiculous and sexist things, but until then, stand up for yourself.

“Each time a woman stands up for herself, without knowing it possibly, without claiming it, she stands up for all women.” — Maya Angelou

Smell ya later.
– Linds

Friends, I would love to hear your stories about the ridiculous things you have been told from doctors.