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Medicine has a lot of terms I dislike. Historically these have included phrases like incompetent cervix and failure to progress in labor – phrases that put the blame on the woman's body. The word that bothers me the most these days is part of the daily medical lexicon. It appears at the top of every single medical chart of every single patient in the country. It's the first thing your doctor sees after seeing your name. It's in the phrase chief complaint.
It's the word ‘complaint' that bothers me because it's killing women.
When Silence is Deadly
From the time we're little girls, we're taught not to complain. Even as adult women we tell ourselves to deal with things that are bothering us by having gratitude. We've learned somewhere along the line that voicing our needs, expressing our dissatisfactions, our discomfort, our pain, is whining, it's complaining. So we don't complain, for example, when we're in our late 40's or early 50's and suddenly tired for a few days, are nauseated, don't feel right, maybe feel more anxious than usual, and have a bit of heaviness in our chests. The problem is that we might not complain our way right through a heart attack.
Keeping silent is killing women, literally. Words like ‘complaint' reflect the bias of a system that belittles women. We are likely to convince ourselves that serious symptoms are nothing in order not to complain about it. And when we do speak up, when we do say something is wrong, in the medical culture we are more likely to be ignored, condescended to, dismissed, and disregarded than men. Most women who come to see me as patients have had some experience of feeling invisible or being treated that way in a medical appointment or in the hospital. Millions of women leave medical offices every day without a diagnosis for serious medical conditions because of this phenomenon.
The statistics bear this out. The preponderance of conditions for which women are ignored and dismissed are conditions that primarily affect women. Autoimmune conditions are an example. This collection of conditions, in which your own immune system attacks your own tissue, include about a hundred different conditions, most notably Hashimoto's thyroiditis, Graves' disease, Crohn's disease and ulcerative colitis, lupus and rheumatoid arthritis, just to name a few. Autoimmune diseases make it into the top ten killers of women annually, yet it can take years for a woman to get a diagnosis of an autoimmune disease even when going to multiple different doctors with her multiple different concerns. It can take years to get a proper diagnosis of an autoimmune condition. And 78% of those who suffer with one (or more) in the US are women.
Notice that I don't use the word complaint. I use the word concern. Why? Because my patients don't have complaints; they have concerns. Most doctors see the word complaint day in and day out, and when they hear symptoms like fatigue, weakness, pain, stress, they assume that it's depression or anxiety. Most often, they write a prescription for an antidepressant or an anti-anxiety medication. It doesn't help that the average physician has 13 minutes with a patient to not only hear her concerns, but to check off all the boxes he or she is supposed to in order to get insurance to reimburse for the visit.
Women's Conditions are Marginalized
It is almost entirely women who suffer from fibromyalgia and chronic fatigue syndrome which, less than ten years ago weren't even considered ‘real' conditions by the medical establishment. Not too long before that, neither was irritable bowel syndrome (IBS). These were all considered fringe diagnoses doled out by alternative practitioners. Women who visited their physicians and said “I think I have chronic fatigue syndrome” or presented a list of symptoms that sounded like it often received eye rolls and even verbally dismissive comments. (Nowadays women report getting the same kind of response from their doctors when they say they think they have a thyroid or adrenal problem!) Guess what these women were called? ‘Difficult patients,' ‘complainers,'or ‘those kind' of patients, suggesting that they really had a psychological issue or were just complainers.
Today we know that IBS, fibromyalgia, and chronic fatigue syndrome are very real medical conditions with very real physiologic underpinnings, and yet, amazingly, most doctors still marginalize these women. Medical journals still feel the need to publish articles explaining to doctors that these are real conditions and that they have to treat patients with respect, not dismissively. Yet these medical conditions, affecting millions of women, are only taught in about 30% of medial schools.
Having a Heart Attack? Beware of Being Ignored Compared
The stakes can get even higher. More women than men have died each year from heart attack or heart disease-related causes since 1984 than men, yet, when women under 55 do have heart attacks, those women are about twice as likely to die as men. This is partly because the model of heart attacks is based on men's presentation which usually includes chest pain. Women don't typically present with heart attacks with chest pain. A woman experiencing a heart attack is just as likely to present with new onset or unusual fatigue, jaw, shoulder, upper back or abdominal discomfort, shortness of breath, right arm pain – or nausea and vomiting, sweating, lightheadedness or dizziness. Thus women are likely not to recognize that they're having symptoms of heart attack, but neither are their doctors because they assume that if it's not chest pain, something else is going on. What's that something else usually dismissed as? Stress or anxiety.
In fact, that's what Carol told me had been going on for her for three days before she came into the emergency department where I was working. After reviewing her symptoms and case with my attending doctor (I was a resident), given that she had no chest pain he told me I could send her home. I asked if we could keep her for a few hours for observation and run some tests, and he agreed. It turned out that she was in the early stages of a heart attack. Unfortunately, it doesn't always go so well for women with similar symptoms coming to the hospital.
A study done in 2012 tracking over a million heart attacks from 1994 to 2006 found that women didn't receive the kind of attention that men did when they were having a heart attack, explaining why 15% of women are likely to die in the hospital from heart attacks compared to 10% of men. The scarier thing is that many women who come into the hospital thinking they're having a heart attack do actually have chest pain, but they're dismissed also, told it's anxiety or stress. Once a woman says “stress,” guess what, ladies? It's considered all in our heads.
Paying Attention to Your Symptoms Does Not Make You a Hypochondriac
I had an experience in which I was dismissed. Over a period of a few years, I noticed that my exercise tolerance had been going down. It started around when I was 36. Even though I was fit and healthy, whenever I rode my bicycle or took a run and tried to go uphill, my heart started racing wildly. I would get overheated and nauseated. My blood would pound in my ears and I'd feel like I was going to faint. Mostly I had to just sit down and let it pass. Then, twice in my medical training (when I was 39 or 40), over a few weeks back to back, I had to run to codes. Codes are like in Grey's Anatomy when everyone goes running to help resuscitate a dying patient.
One of these times, I had to run up six flights of stairs. The other, I had to run the equivalent of a city block. Both times before I got to the code, I nearly fainted and had to sit down, until finally the third time, I did faint, and a rapid response was called on me in the hospital. A bag of IV fluid later, a very dashing cardiologist told me it was just stress. I was a busy mom, he said, overworked in my medical training and dehydrated. “No”, I said, “I don't think so. Something is up.” He assured me it was not, so I sought out another opinion.
An exercise stress test later in the cardiologist's office, after I nearly passed out on the treadmill, the cardiologist came into the room laughing. “What's so funny?” I asked him. He said, “I thought you were just another hypochondriac medical student, but you actually have an electrical conduction issue going on in your heart. You can get a pacemaker or you can just learn to accommodate to it.” “I'll accommodate. Thank you very much”, I informed him, “And no, I am not hypochondriac.” This term has historically been applied to women as has the word hysterical, which incidentally has its origins in the Greek word for uterus. Hysteria was a condition thought to affect only women causing us to be neurotic and insane. Need I say more?
Be a Bad Girl. It Can Save Your Life.
How can you save your own life? Here's what I recommend.
First, trust yourself. Like I did, if you think something is up, speak up. You have to. Nobody is going to do it for you and you've got to get comfortable making yourself heard. Whether you're in your primary care provider's office or the emergency department, tell them something is up, that you don't usually have these symptoms and you need proper medical attention. Don't get sent home without a diagnosis.
If you have a chronic health problem, you might have to do some of your own homework, so do it. Look on the internet or look in books for trusted sources, ideally people with a recognizable credential, but sometimes even what I call ‘citizen scientists'. Other women who have had to figure out for themselves can be good resources too. Make a list using those resources of what tests you think you need or what condition you think you might have, and then schedule an appointment specifically to discuss your concerns with your primary provider. Don't try to squeeze it into a time when you're having a full physical or a pap smear or anything else. When you call the office to make an appointment, let them know you need a full appointment time – that's usually 40 minutes or 50 minutes depending on the practice – not just a 15- or 25-minute quick visit.
Bring an advocate with you, someone who isn't a pushover when it comes to authority and who's absolutely going to have your back, and not do some weird team up with the doctor if there's a powerplay going on. People do weird things around authority, and even more so when there are male/female politics going on. I've seen situations where a woman brings her boyfriend and the doctor is male, and the boyfriend and the doctor side with each other. It gets weird, so have somebody you can really trust, and if you have somebody who you can trust of your own gender, that can be really even more effective a lot of times.
Let your doctor know that you're not trying to be a pain in the butt, but you've been doing some homework and you've got symptoms that are going on that you're concerned about, and maybe they've even been dismissed before by that doctor or by someone else, and that you think that there are tests or a further examination that's going to shed some light on what's going to improve your health. Ultimately, that should be your doctor's goal, and we all want to see our patients thrive with health and happiness, and we love having positive relationships with our patients, so try that tactic. Before you go in, think through what you're asking for and why, what you'd like help with, and write down your key points in a notebook or on some index cards, and use this as a script when you go in for your appointment. It'll help you stay focused and calm, and it'll also help you feel more prepared and organized, and it's going to help you look that way too, like you've given this a lot of thought and research.
At your appointment, it doesn't hurt to let your doctor know that you respect her training and credential, and so you want her honest opinion and you want to rely on her knowledge, but that you really try to be the CEO of your own health and a more active partner in your healthcare – that you really welcome partnership and advice, and that you'd love to work collaboratively. If you feel like your practitioner is not listening or is condescending, if you're unable to speak up because there's a real power issue going on and you feel like you can't take charge, then 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, makes you feel small, invisible, unheard, insecure, or if you have to fight to get what you need, that's not good medicine. It's when mistakes get made. There are statistics showing that when doctors are hurried, they're not paying attention. When they're not making the effort to make good relationship, big important diagnoses get missed.
Finally, I just want to remind you that we have all been taught from the time that we were young girls to be polite, mind our manners, be good, don't challenge authority, be respectful, be nice. I am urging you to own your inner bad girl. I'm not saying you have to be rude, but I am saying you have to be bold, clear, strong, and assertive.
We’ve learned somewhere along the line that voicing our real needs, expressing our dissatisfactions, our discomfort, our pain, is whining. But not speaking up to your doctor can be hazardous to your health. – Aviva Romm