Around 12 years ago, at age 19, Brittany Bella Graham began experiencing severe lower-back pain and a constant throbbing ache in her right side. “It felt like a swift kick,” she recalls, “almost like someone was hitting me in the ribs.” At first, the pain happened only when she stood for a long time, but then it became more frequent. Soon, she felt severe pain whenever she stood or sat — in other words, constantly.
Graham, now an advertising consultant based in Los Angeles, was understandably worried. But, she says, her doctor was less so, declaring the pain the result of an external injury — a pulled muscle, perhaps. Graham was prescribed muscle relaxers, which gave her an ulcer and did nothing to alleviate the pain. It was only once Graham threatened to change providers, she says, that her doctor relented and ordered an MRI, which revealed a cancerous mass on her pancreas.
Graham’s experience, dramatic though it may be, follows a story arc that, for many, is frustratingly familiar. When I began asking around for people who had experienced something like this, the response was immediate and overwhelming. For Tess Townsend, a freelance journalist in Sacramento, the issue was a seemingly simple case of chronic acid reflux, but she says her doctor insisted she was merely asthmatic and that her symptoms were imagined. When Jacksonville-based travel writer Angie Orth went to the ER with a horrible pain in her side, she says the doctor told her it was “just [her] period.” Only after Orth insisted on a CT scan did they discover a bursting cyst.
This is just a sampling of the stories that came flooding in. Writer and patient advocate Abby Norman, author of Ask Me About My Uterus: A Quest to Make Doctors Believe in Women’s Pain, also experienced a dramatic response when her book came out last year: “I was inundated with emails and messages…[and] I realized just how far-reaching and deeply embedded the issue is,” she says.
“Obviously, threatening to change providers worked, because an MRI was ordered that same day.”
As Norman’s book title suggests, it’s a phenomenon that disproportionately features female patients. The issue of women being disbelieved or dismissed by their doctors has been written about extensively, and anecdotes are widespread. Several studies have also found that physicians prescribe significantly less pain medication for women than for men after abdominal surgery; women experience pain for longer before being referred to a pain clinic; and post-surgery, men are more likely to be given painkillers, while women are given sedatives. (“For what it’s worth,” Townsend says of her experience, “I remember when an ex-boyfriend had a similar situation, he was immediately given a prescription for Zantac.”)
Here’s what patient advocates, doctors, and those with firsthand experience recommend doing if you find yourself dealing with a dismissive doctor.
Find the right doctor
The best way to avoid this situation is to find the right doctor in the first place. “You just need to find someone you really feel you can talk to and who you trust,” Norman says. If you see your doctor frequently, developing a “supportive rapport” becomes even more important. Otherwise, Norman says, dealing regularly with a disbelieving or dismissive doctor, on top of your physical pain, “can be very traumatizing.” Even if you don’t see them that frequently, you may have reason to at some point — so it’s best to find someone you click with now, before you’re relying on them for something more serious.
It helps to show that you’ve done your homework. Catherine Callahan, patient advocate and author of You Can Do It: Tools to Better Manage Your Healthcare, advises putting together an “office visit form” that includes any medication changes, current or upcoming medical issues or tests, and up to four questions you want the doctor to answer. This limit, she says, “looks manageable to the doctor as the top-priority questions.”
Norman recommends bringing a record of your symptoms, what you’ve tried, what helps, and what doesn’t. (Tech can be useful here: Norman likes Pictal Health, which uses data visualization to organize and make sense of symptoms for people with chronic conditions, and the Phendo app, which helps patients track and manage endometriosis specifically.)
Don’t try to do the doctor’s job
Avoid offering suggestions about what might be wrong or what course of treatment to try. The lure of Dr. Google can be impossible to resist when you’re dealing with mysterious and unpleasant symptoms, but bringing up your internet findings to your doctor is a good way to get them to dismiss your concerns. Instead, appeal to their authority and spur them to address the problem objectively by asking about the general treatment guidelines for your ailment. “This will really make a doctor step back and recall how to treat things by the book,” says Kadisha Rapp, an emergency medicine physician based in California.
Get a second opinion
Seeking a second opinion doubles your odds of getting a correct diagnosis. Shvetha Zarek, a physician at the University of Missouri School of Medicine, lays out some best practices: “Call in advance to see if the physician sees patients with your symptoms, and explain that it’s a second-opinion consultation,” she says. “Provide any previous results and history that will help explain your story.”
Change providers — or threaten to
Sometimes the only way to deal with a dismissive doctor is to dismiss him or her. Of course, sometimes you might just need to raise the specter of finding a new doctor, as Graham did when her doctor continually refused to order an MRI. “Obviously, threatening to change providers worked, because an MRI was ordered that same day,” Graham says.
Activate the hospital’s patient advocacy system
It’s a well-kept secret that every medical institution has a mechanism in place to assign patients an advocate to help them navigate the system. According to Zarek, the advocate then “works with your medical team to make sure your requests are honored.” These advocates, who are usually affiliated with the Society for Healthcare Consumer Advocacy, can help with everything from navigating bills to pushing for a certain type of support. Depending on your hospital, the patient advocate services might go by different names, like “patient resources” or “patient’s rights,” but you can usually find what you need by searching online for your hospital’s name plus the term “patient advocate.”
Most important, don’t give up on demanding to be taken seriously. In the face of highly trained experts telling you that nothing is wrong, it can be easy to second-guess your symptoms or feel like it’s not worth the hassle of getting someone to believe you.
But sticking to your guns carries great consequence — sometimes life or death — and pays off. “I’d like to be the person who says, ‘Have hope,’” says Norman, whose own endometriosis was ignored for years. “It’s not at all easy… [but] get in the habit of hope, and stay there as long as you can.” Listen to your body, and if you insist that others listen, too, eventually you’ll find someone who will.