Sarah Hyland vented on Twitter about how frustrating it is when your doctor doesn't hear you. We can relate.
The actress has a chronic illness—kidney dysplasia, a condition affecting the structure of one or both of the kidneys from birth—and in 2012, she revealed she had a kidney transplant. Since then, she’s spoken openly about how ongoing health concerns have changed her physical appearance, putting body shamers in their rightful place.
Her chronic health problems have lately sent her to see more doctors. Yet she believes that she is not getting the attention she needs. “For those who are chronically ill and in chronic pain: Have you had the experience of doctors not listening to you?” she tweeted. “If so, how do you not tear their heads off with your bare hands?”
Sarah, we hear you. Chronic illnesses and chronic pain can be torturously difficult to diagnose and treat, especially if you’re a woman.
That’s the focus of a new book by Maya Dusenbery, Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick ($28, amazon.com). Dusenbery, who was diagnosed with rheumatoid arthritis, masterfully takes down the wide-reaching systemic gender bias in science and medicine that prevents doctors from truly hearing female patients. Her book comes on the heels of two others that cover the same topic, Invisible: How Young Women with Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine by Michele Lent Hirsch and Ask Me About My Uterus: A Quest to Make Doctors Believe in Women's Pain by Abby Norman.
The system needs a massive overhaul, Dusenbery argues, and we're all for it. But how does a woman get her doctor to listen to her and take her issues seriously? It’s not always easy, and it’s certainly not fair. “We are asking individual women to compensate for the medical system’s failures,” Dusenbery writes.
With that injustice in mind, here are four strategies that can help you advocate for your own best care.
Dusenbery shares the story of Lauren Stiles, co-founder of the patient advocacy group Dysautonomia International. Stiles says it took online research of her own to figure out what was causing her symptoms. “I diagnosed myself through the Internet, I found the doctors I needed through the Internet, I found the other patients I needed for support through the Internet. . . . Thank god for the Internet.”
While we’re not suggesting you should believe everything you read online, connecting with other women who are sharing similar symptoms can help you arm yourself. Gather names of possible diagnoses or tests you can then ask your doctor about. Bring up your family history too—especially of harder-to-pinpoint conditions like autoimmune diseases. Unless prompted, your doctor may not think to ask you about these, unfortunately.
Of course, as Dusenbery points out, “this is not how it should be. We deserve better than a medical system in which … patients have to do everything themselves.”
Be specific about your symptoms
When you see your doctor, describe your symptoms precisely. That means where it hurts, when it started, and remedies you’ve already tried in an attempt to get them under control. This focused approach may help your doctor pay closer attention, gender-specific medicine specialist Marianne Legato, MD told Health previously. Ask about the conditions you’ve researched and the tests you think could help you using proper names.
Insist, "this is not normal"
Conditions like endometriosis, for example, have long been shrugged off as a "symptom" of menstruation and nothing more. But an increasing number of experts are making the case that severe period pain is never normal. Thanks to this change in thinking, Dusenbery notes a shift in how women are responding to physicians who play down their pain. “Women are less willing to accept it when doctors try to send them off with a paternalistic pat on the head and the assurance that debilitating pain is simply a ‘part of life.’”
Yes, it’s cliché to tell you to listen to your body, but it’s essential. Experts told her over and over to “trust that you know when something is wrong,” Dusenbery writes. Instead of second-guessing yourself, speak up.
To get our top stories delivered to your inbox, sign up for the Healthy Living newsletter
If you're getting nowhere with your current doctor, try to find one who is a better listener. Yep, it sucks to have to shop around for a new doc in the middle of whatever you’re going through, but it’s often necessary. Case in point: “On average, autoimmune patients see four different doctors over a four-year period before a diagnosis is made,” according to the American Autoimmune and Related Diseases Association.
Asking for a referral might help take some of the legwork out of it. Dusenbery quotes Heather Guidone, surgical program director at the Center for Endometriosis Care: “Women now are saying, ‘This is not normal. If you can’t help me, please send me to someone who will.’”