How To Advocate For Medical Care When You Need Help
I spent most of 2019 exhausted. During treatment for an early form of breast cancer, I hiked around New York City flashing all types of doctors who poked and prodded and typed notes about my chest. One team cut out the offending cells in May, and others filled my July social calendar with a month of radiation therapy.
Radiation fatigue can drain you. Radiation burns add to that. The sessions are painless, but they create the equivalent of a wild internal sunburn that works its way outward with a vengeance. A few weeks in, my chest and underarm were charcoal black and would crack open with zero warning. Picture molten lava streaking down the dark rock of a volcano—that’s the look.
Sharing your symptoms should be enough. Yet getting the care you need often isn’t as simple as asking.
When I asked my radiation oncologist for the numbing salve other patients said could help, I got nothing. “Sometimes that just happens,” she told me in a monotone. I don’t recall her looking away from her computer.
“No,” said my husband, Mike, who’d come along for moral support. “She’s really hurting.” The doctor whipped around on her stool to face him. “Well, then let’s get a prescription for that today,” she said.
I hated what had just happened but lacked the energy to call it out. Why couldn’t she have believed me? Or at least believed my skin? Knowing that doctors are more likely to believe men about pain and other issues, I figured I might as well let my husband get that salve.
Sharing your symptoms should be enough. Yet getting the care you need often isn’t as simple as asking. If you’re not feeling well, but you’re struggling to be heard, know that you’re not alone. And know there are ways to bend the medical system in your favor.
These are a few methods I saw get results—and hopefully, they’ll help you too.
1. Bring a list of questions—and ask them all
For common diseases like breast cancer, medical organizations such as the American Cancer Society have online templates of questions to ask doctors. I copied and pasted those into a Google doc and shared the file with Mike, so we both knew the topics to cover.
Whether you’ve been diagnosed with a condition or you’re trying to get clarity about symptoms, look for lists online or search Reddit to see what people are asking. Adjust as needed, and be sure you cover your whole list—if not at your visit, then through a timely follow-up or a patient portal response.
2. Bring an ally to your appointment
Wanda Sykes explains the importance of the buddy system in a “Last Week Tonight With John Oliver” segment. Bias in medicine is real, and it’s complex. Frustration is valid when you need someone to vouch for you. With that in mind, I did get the best results when I brought Mike. Having somebody along helps with note-taking, and they can echo what you say for emphasis. Bringing a symptom journal can help further.
3. Make a friend on the inside
If a doctor dismisses you or speaks to you unprofessionally, then their team might get similar treatment. While seeing the radiation specialist, I bonded with one of her nurses. We both loved Madewell sandals, and that was enough to start getting chummy. That nurse gave me extra bandages when I ran out, showed me tricks for wrapping wounded skin, and generally boosted my mood with chit-chat about non-cancer topics. Maybe that nurse is just especially kind and helpful, but humanizing yourself to your care team is a good idea in general.
4. State the facts without doubt
Say a nail punctures your car tire. And say you go to the mechanic to get things fixed. Do you have to prove you know there’s a nail hole, justify how it got there, or explain whether it’s “your fault”? I sure hope not. It’s a matter-of-fact problem that needs a solution.
Doctor visits are obviously more nuanced than trips to get your car, computer, or phone fixed. Often, the issues you’ll describe—such as pain level—are more subjective. A good provider will be curious about what you say and never make you doubt what you’re sharing. Repeat your concerns if necessary. Would you leave the mechanic without getting that tire fixed?
5. Force a pause
The average doctor visit lasts 10 or 15 minutes. Imagine that workday. It’s probably tough to maintain your energy, mood, and focus when you’re zipping from patient to patient amid major burnout. That’s a lot—and yet patients still need good care.
If you feel shuffled along, then create a time-out. Politely but firmly say: “I don’t feel like I’m being heard.” You’re advocating for yourself without insulting the provider. I had to do this several times, including when I felt like specific medications with major side effects (menopause in my 30s!) were being forced on me. You’re an individual. You deserve to be heard like one.
6. Turn to other departments or clinics
Many larger clinics have staff to advocate for patients. Check for a department like customer relations or patient services. It’s the equivalent of patient HR.
Does going there feel like snitching? Kind of. But again, if you’re being dismissed, then you’re probably not alone in that. You’ll also be speaking up for patients who don’t feel comfortable doing so. A team member will look into the issue and follow up to tell you how things will improve; it’s my experience that these reports are taken seriously. You also can call those departments for help navigating issues like insurance denying a necessary procedure. Those services are available for a reason.
On the note of services, if you’ve tried everything and you still aren’t being heard or you feel forced into big decisions, then listen to that instinct that says, “this doesn’t feel right.” Get a second or third opinion. If you’re in an area where specialists are scarce, you might find help via telehealth or a patients’ rights advocacy organization.
7. Give yourself a reboot
Tackling health problems is difficult in the best conditions, and it’s even harder when you’re spending energy struggling to be heard. Once a week or so, Mike and I would get blueberry ice cream at Van Leeuwen as a simple, happy treat. Make time for positive little moments to take your mind off tough days and to recharge as best you can.
I’m thankfully cancer-free now, and fighting for my health taught me plenty about speaking up for myself. Whatever you’re going through, don’t doubt what you know about your body. You have agency to get help—even if it takes some maneuvering and having others back you up. I’m just a writer on the internet, but I believe you.
Jill Hilbrenner is a writer based in Beacon, New York, where she owns the natural beauty and floral shop Witch Hazel. She lives with her husband, Mike, and two rescue dogs, Blanche and Suzy Lee.