Did you know that, on average, it takes up to 5 years for a woman struggling with the symptoms of an autoimmune disease to get an accurate diagnosis? Women with Hashimoto’s symptoms, for example, often fall through the cracks – sometimes suffering for years with fatigue, brain fog, weight gain and inability to lose weight, depression and anxiety, and sometimes serious hormonal challenges like infertility or recurrent miscarriages, before getting properly diagnosed and treated. And for women with endometriosis? A shocking 9.3 years of pain and other symptoms, on average, before a diagnosis is made.
It doesn’t end there. More women die of heart attacks in the hospital each year than men. Let me make that even more clear – women already in the hospital who then report heart attack symptoms, are more likely to die of heart attack than men in the same situation. We are more likely to be told it’s anxiety or stress, and are more likely to be given a sleep, anxiety, or pain medication, whereas men are more likely to receive an appropriate cardiac workup.
Thousands of women have written me with stories not just of being medically dismissed, but medically mistreated – to the extent that we really need a hashtag for medical abuse as in #medicalmetoo.
- Recently, a Latina woman told me that, upon hearing she was having chest pain, her doctor told her that she was a “hysterical Cuban woman.”
- Another woman told me, regarding her weight, that her doctor had told her that if she just did a better job of “controlling her fork to mouth problem” she’d lose the weight. In fact, she had severe and undiagnosed Hashimoto’s.
- And when I sent a lovely woman in whose breast I found a highly suspicious breast lump during her initial prenatal care physical exam to an obstetrician for exam and possible referral to a breast surgeon for further evaluation, the day after the appointment she told me that the doctor never asked why she was in the office despite my clear referral note which she’d not read, and didn’t do a complete exam, so never knew about or found the lump. The woman, not a native English speaker and very polite, said, “The OB seemed so stressed and busy I didn’t want to bother her with my symptom.” So I called the OB, explained what she’d missed, and my patient went back in the next day. She was 5 months pregnant and had a Stage 4 breast malignancy that could have been entirely otherwise missed.
And don’t even get me started on the stories I’ve heard from women in labor during my years as a midwife or that I’ve witnessed during my years of medical training.
Old Biases are Still Ruling the Roost
The medical bias against women is well-established in the medical literature. Our historically paternalistic medical model has been statistically shown to dismiss and ignore women’s voices, and also to create an environment in which we feel uncomfortable speaking up lest we “bother the doctor,” or seem “complaining,” “demanding,” or “difficult” – in fact, words used by health-care providers to describe women who ask to have their needs met and symptoms properly worked up.
When it comes to your symptoms and health concerns, never shut up until you get satisfaction. I’m serious. @avivaromm
It’s also been demonstrated in the medical research, that as women, we too, have internalized “our place” in the power structure. We do not want to be perceived as difficult, complaining, or unappreciative. We want to be liked by our medical providers. So to fulfill our ‘good girl’ role, we change our behaviors and communication style in medical appointments – at the expense of speaking up about the full extent of our symptoms and concerns.
We're Also Not Speaking Up
Speaking up to our doctors – or anyone in authority for that matter – can be really hard. But it's critically important that we become our own health care advocates. And that starts with – you guessed it – being able to speak up!
Yet there's a reason we're often not speaking up. First, the hurried structure of most medical appointments leaves precious little time for us to get to our agenda – and a busy doctor who seems harried is not going to create a feeling that she or he is receptive to what we have to say. More insidiously, as women, we are programmed to not appear complaining, demanding, disrespectful.
If you have kept quiet in a medical appointment please don't feel ashamed. It's happened to most women at some time, and continues to happen to most on a daily basis. Learning to speak up for ourselves is much harder than speaking out against a cause; it goes against the grain we've been taught to follow, and can feel uncomfortable. But get uncomfortable we must if we're going to protect ourselves and change a system long in need of an overhaul!
Not speaking up poses a serious danger to our health – and our lives. Take Serena Williams’ recent childbirth experience. One of the best-known athletes in the world had to walk her doctors through how to test her appropriately for blood clots when, after she gave birth, she’d been dismissed by a nurse as simply needing more pain medication. Had she not demanded that the doctors run the correct tests to find the potentially fatal clots that had formed in her lungs, she might have died, as do so many women in similar situations, and particularly Women of Color. Serena knew – she almost died of similar clots in 2011 – and brought out her fierce mama bear self to save her own life.
In a recent episode of Grey’s Anatomy character Miranda Bailey, Chief of Surgery at a major (fictional of course) hospital in Seattle almost dies because a series of (male) medical doctors don’t take her heart attack symptoms seriously. In fact, they assume, because of her history of OCD, that she has mental health issues surfacing, and call a psychiatric consult on her – directly demonstrating the way that medicine, to this day, dangerously assumes we are hysterical, with symptoms “all in our heads” (it’s just that now we say depression, anxiety, or mental health problems) and again, misses and dismisses potentially life-threatening disease. I won’t give the show away – but even if you never watch it – watch that episode.
What can tennis and TV teach us about saving our own life? Read here to find out how to hold onto your nerve and power in a medical appointment. @avivaromm
Power Dynamics Can Show Up Anywhere
Power dynamics can show up in unexpected places. There’s a tremendous tendency in all fields to identify with the oppressor – to mimic behaviors either because they are so culturally ingrained that we don’t know we’re doing it, or to emulate the dominant and expected model in hopes of being perceived as legitimate and accepted. It’s why we see all manner of alternative practitioners donning white coats on their website banners and in advertisements for their programs and products – even when they themselves have no medical credential (it’s also why I do not have and have refused to wear a white coat).
The risk – and reality – is that that the dominator medical model can – and does – rear its ugly head even in functional medicine, naturopathic, and other offices. It might come in the form of dismissing your actual medical concerns and giving you an alternative diagnosis (I can’t tell you how many women I’ve seen who actually had anemia, an autoimmune disease, Lyme’s disease, or another medical condition who were told by an integrative, functional, or other practitioner that they had a thyroid problem or “adrenal fatigue” – only to be put on a boatload of pricey supplements – without ever being properly medical tested for a thyroid, adrenal, or any other medical problem). I’ve also seen women who were essentially “blamed” for their medical problems in such settings because of negative spiritual beliefs or negative mental attitudes – and hey – the spiritual way of still saying it’s all in our heads!
And it’s not just men dismissing women (though that’s still a big part of the problem due to power dynamics and lack of appropriate understanding of women’s unique needs). In Serena Williams case, for example. it was apparently a nurse (and a woman) who dismissed her, not a doctor, and in the case of my pregnant patient with breast cancer, it was a woman OB. It’s a problem inherent in a medical model that sees the care provider as the one with authority and power over, and the patient as subordinate, weak, and ignorant.
How to Be Your Own Health CEO and Get What You Need from a Medical Encounter (Becoming a Health Care Badass)
If you, too, have been dismissed, dissed, or treated with disrespect while trying to get medical help, I know how painful and frustrating this is – and how it may keep you from getting the medical help you need in the future. I also know that as women, the only way we can take charge of our health is to become our own health CEO – even if you’re tired and feel you can barely muster the strength.
Below please find my top 6 tips for speaking up, overcoming the gender bias in medicine, and having a connected and collaborative discussion with your MD. My hope is that these tips help you to get the health care you need, when you need it, improve your relationship with your primary care provider – or bolster your courage to find another if you just can’t get satisfaction. Nobody should feel they can’t tell their care provider why they came in for an appointment, and nobody should leave a medical appointment feeling dismissed, ignored, overlooked – or disrespected.
- Schedule a symptom-specific appointment. Don’t tack concerns about fatigue, brain fog, and weight loss resistance, or other symptoms onto the end of an appointment for a pap smear or I-think-I-have-the-flu visit. Schedule an appointment specifically to discuss your current concerns, ideas, health care needs, and requests.
- Be a client, not a patient. Reframe how you think of yourself. Think of yourself as a client who is hiring a doctor. It’s similar to hiring an interior decorator for your home: if they only do Country French and you like contemporary, you won’t hire them. And if you’ve asked for contemporary and they start filling your home with Country French, you’d fire them. You are the client and you can hire a doctor whose style, background, values, etc. match yours.
- Prepare for your appointment. Before the appointment, think through what you are asking for, and why, what you’d like help with, and write your key points down in a notebook or on index cards, and use this as a script when you go to the doctor. This will help you to keep focused and calm, as well as make you look prepared and organized, like you’ve given this some thought and research.
- Manage your care provider's possible reaction. At your appointment, let your doctor know you respect her training and credentials, and so appreciate her knowledge; also let her know you’re learning to become the CEO of your own health and more of an active partner in your own health – and that you really welcome her partnership and advice. Tell her that you’d love to work with a doctor that sees you this way and who also enjoys working collaboratively. While this may seem obsequious, it is an effective strategy because medical professionals are taught to be the authority and if your doctor feels undermined or that his/her judgment and years of training and experience are being questioned, it can create an adversarial situation. So manage this preemptively.
- Bring resources with you. If your doctor won’t order labs or tests, or can’t seem to connect the dots between your symptoms and the diagnosis you think you might have, bring some resources with you for supporting your requests and enriching the discussion. For example, I encourage women with Hashimoto’s, fatigue, and other related symptoms, to bring a copy of my book, The Adrenal Thyroid Revolution, and a couple of selected medical references with them to an appointment. If your care provider asks you if you got your “medical degree” from Dr. Google, as some women have told me they’ve been asked, I’d consider that a firing offense.
- Bring an advocate. Bring a friend or loved one with you, preferably a woman. Having another woman by your side – preferably a solid friend- will help avoid any power dynamics between a male doctor and your male advocate. However, your mother, for example, might be holding onto old-school power dynamics and suddenly start saying, “Honey, you should listen to your doctor, he knows best.” Family members are usually too close for comfort unless you have a badass sister or adult daughter – and that could work. Your advocate can take notes, help you stay on track with your script, and be there for moral support if needed. There’s strength in numbers . If you can’t find someone to come with you, bring Wonder Woman or your own version Sasha Fierce. #healthcarebadass
When Your Doctor Still Doesn’t Hear You, It’s Probably Time to Break up
If you are unable to have an honest conversation with your doctor, if you feel your doctor is not listening or is condescending, or if your medical doctor continues to deny your knowledge about what’s going on in your body – for example, your symptoms and requests for appropriate testing (unless she/he has a reasonable explanation and can back up with studies why the testing you might be requesting isn’t appropriate) – then it might be time to part ways.
You should be able to have mutually respectful conversations with your care provider, to get the answers you are seeking, and to be able to explore your concerns. If you can’t, then figure out whether the obstacle is in your being unable to speak up because of a perceived power differential (many of us become weak in the knees when we face our doctors, especially if we feel vulnerable about our health) or whether your doctor is just not communicating respectfully. And make the change!
Sometimes you might have to do the hard work of breaking up with your doctor. You deserve to be respected. If your doctor (or any practitioner) is insensitive, condescending, won’t listen to you, makes you feel small, invisible, unheard, insecure, or you have to fight to get what you need, that’s not good medicine. It would probably serve you best to find another provider.