By Angela Haupt
TIME
September 11, 2023
Liz Helms still remembers the way her doctor looked at her 30 years ago, when she described the severe pain she was experiencing in the area around her jaw. She told him she had limited facial movement and frequent muscle spasms, and that it felt like she was being struck by lightning again and again. She cataloged the ways her life had turned upside down. “But I could see it in his face—he either wasn’t listening or didn’t believe me,” Helms says. She remembers thinking: “They treat animals better than they’re treating humans.”
Helms—who has a temporomandibular joint disorder—spent a year and a half fighting for the right treatment. The struggle inspired what has become a decades-long patient advocacy career: She’s the president and CEO of the California Chronic Care Coalition, and she launched My Patient Rights, an online resource that helps people who are dissatisfied with their health care. “I decided to do something because I knew I wasn’t the only person who was having these issues,” she says.
Clearly, communication difficulties between patients and physicians aren’t new. But some experts report hearing more and more frequently that patients feel like their doctors are tuning them out and dismissing their concerns. “If I had a dollar for every time I’ve heard about this, I’d be a wealthy man,” says James Jackson, director of behavioral health at The ICU Recovery Center at Vanderbilt, in Nashville. He works extensively with people with chronic diseases such as Long COVID, who often feel overlooked and ignored. “This is a drumbeat—a nearly constant theme,” he says. “It boils down to some version of, ‘You look fine. You sound pretty fine. Take some medication and come back in a month.’” Dismissing patients’ concerns, of course, isn’t just frustrating: It can lead to missed diagnoses and delayed care.
If you suspect your doctor isn’t listening to you, experts suggest employing these strategies.
1. Spend time preparing for every appointment.
Any time Dr. Ann Maria Hester walks into a doctor’s appointment, she’s ready to give a one-minute elevator pitch about why she’s there. That helps expedite her care, she’s found. “The doctor can diagnose me quicker, and I can get what I need and move on,” says Hester, a board-certified internist and author of Patient Empowerment 101.
Spend time rehearsing the way you’ll describe your symptoms to your doctor, she suggests. Aim to incorporate context (what was going on when you first noticed the problem), overall duration, how long each symptom lasts, and modifying factors that make the problem better or worse. Be ready to rate the pain you’re experiencing on a scale of 1 to 10, Hester says—and make it a point to utilize adjectives like “sharp” or “dull.” The more concise and specific you are, the better the chances that what you’re saying will register with your doctor.
2. Get vulnerable.
Jackson, who’s a psychologist, doesn’t do much marriage counseling anymore. But he still returns to a point he used to make to quarreling couples: Anger triggers defensiveness. Vulnerability, on the other hand, opens the door to meaningful conversation and progress. Likewise, he says, if you blow up at your doctor, you’re probably not going to get anywhere.
Instead, aim to show your vulnerable side, even if it doesn’t feel natural. That means being open and honest, both about what you’re experiencing and how your provider’s attitude is affecting you. Instead of staying silent or downplaying symptoms, describe them candidly—which is often challenging and uncomfortable, Jackson acknowledges. One way to do that is to write down your five biggest worries ahead of time, and share them with the physician. “Your doctor might not be fully aware of how much you’re hurting, and how many times you’re beating your head against the wall,” he says. “When patients can be vulnerable about the magnitude of difficulties they’re having, and talk about it with real honesty, that often leads to a better outcome than they’d otherwise have.”
3. Ask specific questions.
If you and your doctor aren’t communicating well, Hester recommends seizing control of the conversation—and your health—by asking smart questions that require a response. For example: What might have caused the problem you’re dealing with? What’s the specific name of your diagnosis? (Knowing that will allow you to do your own research at home, which can help you feel more empowered, she notes.) Is the problem serious? Will it heal completely or require ongoing management? What future symptoms might suggest you need emergency care or a follow-up visit? When and how will you receive your test results? If you don’t understand something, she adds, don’t hesitate to ask: “Can you explain that in simpler terms?” Or: “Can you give me more details about that?”
4. Take someone with you.
When Courtney Quinn had breast cancer, she always took her wife along to doctor’s appointments. The two treated each one like a business meeting, and prepared in advance by discussing goals, questions, and frustrations. “There were many times when I felt like the doctor wasn’t understanding what I wanted or needed, and [my wife] could tell I got frustrated,” says Quinn, executive director of Albie Aware Breast Cancer Foundation, a nonprofit that aims to provide breast cancer testing, education, advocacy, and support. “She was able to say to the doctor, ‘Courtney and I have talked about this, and she’s told me it’s one of her major concerns.’ She became the advocate in the room.” Quinn’s wife also took notes throughout appointments that the two could review later, filling in any gaps in memory.
If you don’t have a friend or family member available to accompany you to appointments, consider enlisting a professional. Ask someone within the health system, like a nurse, to be connected to a patient advocate or navigator, or reach out to your health insurer. You could also search online directories like those maintained by AdvoConnection and the National Association of Healthcare Advocacy.
5. Be relentless.
If your doctor isn’t addressing your questions, either repeat them or rephrase them. If you still don’t get anywhere, Hester suggests following up with one of these statements: “It doesn’t seem like we’re seeing eye to eye, and it’s really important to me that you understand my concerns.” “I’m worried about my condition and need to know more.” Or: “I understand you have other patients to see, but I’m not comfortable with my level of understanding about my condition. I’d like to end today’s visit with resolution of my greatest concern. How do you suggest we address this without my having to wait weeks for another appointment?”
6. Give feedback—and consider moving on.
If you’re not making any progress with your doctor after two or three visits, it’s probably time to start looking for a new provider. It can also be helpful to speak up about what you’ve experienced—doing so could inspire change. “Write to [your doctor] directly,” Hester says. She still recalls a time, 25 years ago, when one of her patients complained that she wasn’t paying enough attention. “I remember what she looks like, decades later,” Hester says. “And from that time on, I made an effort to do better.”
Depending how unsatisfied you are with your care, you could also notify your doctor’s medical group and your insurance company, Hester says, or leave feedback on their online profile. If you’re dealing with a serious issue—like a doctor who prescribes the wrong medication, or fails to provide test results in a timely manner—it might be appropriate to file a complaint with their state medical board.
And remember: “Your voice matters,” Hester says. “When you become an empowered patient, you can empower your spouse, your kids, your parents—and that can have a ripple effect that changes health care as we know it.”