(Editor’s Note: Emily Dwass has written an important book, entitled Diagnosis Female: How Medical Bias Endangers Women’s Health. The author has written extensively on health, food and cultural issues for major publications. The reason for this book is that she learned and experienced what many women believe—my doctor wasn’t listening to me)
On more than one occasion, when something out-of-the-ordinary has taken place, I excitedly tell my husband about it, starting with, “You’ll never guess what happened.”
“What happened?” he wants to know.
I begin at the beginning: I left the house. I walked to the library. I bumped into Anne—it’s been forever since I saw her. You won’t believe what she said.
I can see my husband getting impatient—he wants me to cut to the chase. But, like many women, that’s not how I tell a story. I take my time with the tale, with lots of important or amusing (in my mind, anyway) details, until finally I wend my way to the end.
In recounting a run-of-the-mill experience, there’s nothing wrong with this approach (except for perhaps exasperating your partner.) But in a medical setting, it’s another story. Rather, it should be another kind of story. Better yet, it shouldn’t be a story at all.
In my own medical crisis, had I done a poor job of telling my doctors about what was going on? The reality is, patients need to engage their doctors, hopefully inspiring them to think creatively about their condition. With that goal in mind, I now realize that the last thing you want to offer doctors is the kind of rambling account I tell my husband.
Instead, experts recommend coming to a medical appointment with an easy-to-digest executive summary of your problem. In a business setting, this kind of concise description is called an elevator speech—because it’s supposed to be about as long as a typical elevator ride, a minute or less. In Hollywood, it’s a log line, where you condense your pitch to a succinct synopsis that gives listeners the gist of the project while sparking their interest in you.
After that brief description of your problem, you should give very specific information of when and how symptoms occurred, and what you were doing when they happened. (Writing it out ahead of time on your phone or on index cards can help you from getting frazzled and forgetting key details.) Let’s say you are seeking treatment for dizziness: When did the episode begin? Where were you? What were you doing? Did anything unusual happen? Okay, you got dizzy while you were getting dressed. Then you went downstairs. Did you have to hold on to the wall? Was the room spinning? All the specifics—the symptom details—are the things that matter and will help the doctor better evaluate your condition.
Experts also suggest trying to communicate health concerns without getting emotional. Obviously, dealing with an undiagnosed illness is upsetting—and it’s maddening that physical symptoms in women often are brushed off as psychological—but it may help keep a doctor from jumping to that conclusion if you can remain matter of fact in relaying your medical information. If the doctor still seems dismissive, remember that you have the power to go elsewhere.
Dr. Marjorie Jenkins, an internist at Texas Tech University Health Sciences Center and the founding director and chief scientific officer for the Laura W. Bush Institute for Women’s Health, said it’s appropriate to consult with another doctor if you feel you aren’t being listened to or heard: “If I took my car to the same mechanic five times and it still made the same noise every time, do you think I would go back to that mechanic? Women have to be healthcare consumers, meaning, if they don’t get what they need in one practice, they need to go find a provider who will listen to their concerns and appreciate the fact that women know their bodies.”
Dr. Jenkins added, “If a physician claims your physical symptoms of fatigue are due to depression and you know that’s not the case, tell the doctor something along the lines of: ‘I don’t meet the criteria for depression. I’m not crying, I’m taking care of my family and I’m still doing everything I need to do. I don’t believe that just because you haven’t found an abnormality in the lab work, that means this is depression.’”
Once a doctor offers a diagnosis, patients should ask probing questions, such as: Is there anything else that this could this be? Are there other tests I should have? If the doctor refuses to engage in that conversation, again—find another doctor. If you are given a diagnosis and follow the prescribed plan but you fail to get better, don’t assume it’s the treatment that isn’t working. It may be that the diagnosis simply was wrong.
Dr. Sami Saba, a neurologist at Lenox Hill Hospital in New York City, pointed out that a diagnosis—particularly one for vague symptoms with no clear abnormalities in testing—is an opinion. “That’s all it is,” said Dr. Saba. “If you get an opinion that you don’t feel comfortable with, you can always seek another one. If you can get a personal recommendation for a doctor from family, friends, other physicians, that can be more helpful than just looking up somebody on the internet.”
But even with armed with a recommendation, Dr. Saba acknowledged that the process of finding a compatible doctor can be challenging for women: “How do they know which doctors are going to believe them, which doctors are going to put in the effort to figure out a complicated case? It’s not easy.”
When I interviewed her for a Los Angeles Times story on coping with a medical crisis, UCLA social worker Amy Madnick stressed the importance of having someone with you at appointments, especially after receiving a difficult diagnosis. “Don’t try to do this alone,” she advised, pointing out that when you are anxious, it’s hard to assimilate new or overwhelming information. She suggested giving your support person a copy of the questions you want answered during the consult.
If a doctor uses confusing medical jargon in discussing your case, you can be honest and say, “I don’t understand.” Ask the doctor if you can send follow-up questions via e-mail or if you can call. “I usually advise women to have a conversation with their physician and be inquisitive,” said Dr. Alyson J. McGregor, director of the Division of Sex and Gender in Emergency Medicine at Brown University. “Ask whether the medication that they’ve been prescribed or whether the test that they’re about to have is specific to discovering and treating these particular conditions in women. The doctor may not know that answer, but it will stimulate the doctor to think, Oh, maybe I should look that up. Physicians want to do well; if they are not aware of these differences, and it comes from the patient, they will embrace that understanding and new knowledge. So I always empower women to question their physicians and to have the dialogue.”
Although consulting with “Dr. Google” sometimes is frowned upon, it can, in fact, be productive to conduct your own research on the internet before a medical appointment, sticking to respected sites such as the Mayo Clinic or the National Institutes of Health. There’s nothing wrong with bringing your research results to your doctor, and saying, for example, “I’m concerned, because my symptoms sound like lupus.”
If a particular symptom is worrying you, tell the doctor about it early in the appointment. Try to avoid a “doorknob” or “by the way” discussion—meaning, a problem you don’t bring up until you are on your way out the door, either because it slipped your mind or because you were afraid to mention it. “By the way, I’ve been coughing for six weeks” is worth discussing up front, not as you’re leaving the exam room.
In trying to get diagnosed, it’s best not to underplay symptoms. Dr. McGregor urges women not to tell doctors, “‘This is probably just nothing.’ . . . I would like to remove that from the conversation.” On that same theme, it’s also important not to let our fears influence how we describe the symptoms. Nobody wants to face the prospect of a serious problem, but critical care physician Dr. Rana Awdish, director of the Pulmonary Hypertension Program at Henry Ford Hospital in Detroit, recommended being as honest as possible, allowing the “weight of the symptom to declare itself” without trying to make what is happening less or more than it is. Dr. Awdish pointed out that our feelings—whether anxiety or denial—can sway what happens in a doctor’s office: “It’s common to either worry that something represents the worst case, or you don’t want it to be anything, so you minimize it. I don’t think people realize how much physicians are really influenced by that editorializing. We want it to be nothing as much as you do. So if you say, ‘Oh, yeah, this chest pain came on, but I had had a big meal, it’s kind of gone away,’ that gives the doctor permission then to minimize it, too.”
In my case, I now realize that I was too eager to accept two neurologists’ responses when they assured me that nothing dire was going on. I didn’t want to have a problem, so I was relieved to hear their nonchalant dismissal of my fears, which led to four years of being misdiagnosed. I like to think that going forward I would be much more assertive if faced with that situation and would demand to know: “What tests would you advise I have to rule out anything serious?”
Any woman facing surgery should ask additional questions, especially about the medical devices that may be used in the procedure. Amy Ziering, producer of the documentary The Bleeding Edge, an exposé about the medical device industry, recommends asking how other patients have fared with this device after two, three, or ten years. What is the device made of? Have these materials caused allergic or autoimmune reactions in patients? Has the device been tested on women? She also urges patients to inquire whether the surgeon receives payments from device companies. Ms. Ziering added: “The best protection patients have is to ask questions and do their own research. Know that your interests and those of the companies that stand to profit from your procedures are not wholly allied. So buyer beware.”
From Diagnosis Female: How Medical Bias Endangers Women’s Health
(Editor’s Note—It’s a good read. The book is available on Amazon and in many public libraries. We encourage you to read it.)