In an overloaded healthcare system with often-exhausted medical professionals, knowing how to advocate for the health treatment you deserve is more important than ever. This is especially true for women.
“Medical training and the ‘ivory tower’ afford [doctors] a lot of unearned power and privilege in the exam room,” says Anjana Sharma, MD, an assistant professor of family community medicine at the UCSF School of Medicine. “Doctors need to own that power differential, learn trauma-informed care practices, and consider the power dynamics that existed even prior to the clinic visit.”
Self-advocacy — letting your doctors know that you have a human right to equal treatment and care — is one way that you can shift the power dynamic in your favor.
It also means taking an active role in your health journey, ensuring confidence that you’ll get the care you need and boost your satisfaction with the whole experience.
Here’s your pre-appointment checklist with 10 ways to advocate for yourself at the doctor’s office, according to women who’ve been there.
Don’t let comments about “Dr. Google” stop you from looking into your symptoms. Doctors are only human — and sometimes they’re wrong. Bridgette Hempstead, a two-time breast cancer survivor, experienced this firsthand nearly 25 years ago when her doctor told her Black women don’t need mammograms because breast cancer doesn’t affect them (!).
After Hempstead firmly insisted on a screening and was subsequently diagnosed with breast cancer, the doctor called her to apologize. She said she’d been taught to believe that in medical school.
While this happened decades ago, research shows that some medical students and residents still hold false beliefs rooted in centuries-old racist stereotypes (like “Black people’s skin is thicker than white people’s skin”). This can have dire consequences, from disparities in pain treatment for people of color and women to death from preventable causes.
That’s why Hempstead founded Cierra Sisters, an organization that provides support, education, and advocacy for African American women’s breast health. She recommends arming yourself with information. Trustworthy sources (like .gov, .org, and .edu sites) can help you figure out what might be going on and which questions to ask at your appointment.
Then, if your doctor comes up with a conclusion that doesn’t make sense to you, you can ask them to clarify why they believe what they do, request tests to rule out other possibilities, or ask about other treatment options.
Bookmark these sites for the next time you need answers
LaTasha Perkins, MD, a family physician in Washington, D.C., took it as a bad sign when her doctor failed to address that her pregnancy was high-risk due to her age. When she brought it up, her doctor dismissed her concerns and gave her a speedy rundown of potential issues.
“That was not enough for me, so I immediately decided to find a new doctor,” Perkins says. “I did my research and found a Black female physician that was a better fit for me.” Her advice: Know what you want and don’t want in a doctor.
With word of mouth and accessible info, you can learn quite a bit about doctors and their practices before you schedule an appointment. Visit their websites and check out their reviews. If the information you’re looking for isn’t there, email or call their office to get answers.
A few helpful resources:
- If you’re LGBTQIA+, use the GLMA provider directory to find providers committed to maintaining an LGBTQIA+-friendly practice.
- If you’re trans, you can use the directory from the World Professional Association for Transgender Health (WPATH) to find trans-affirming docs.
- If you’re in a larger body, check out the Fat Friendly Health Professionals list.
- If you’re looking for a psychiatrist who offers appointments online, here’s our guide.
Tell your healthcare provider what you need from them and ask them to jot down your requests in your chart before you come in. Take it from Jenn Welch, a comedian and writer:
“For a few years now, I’ve given my doctors two pieces of information at the start of any appointment, and it’s made my experiences at the doctor’s so much better: I’m in recovery, so please don’t give me any narcotic painkillers, and I have PTSD from sexual trauma, so please let me know if you are going to touch me and talk me through whatever procedures you’re going to do.”
Whatever your needs, be open about them so you can be present and make the most of your appointment.
Johannah Ruddy, a patient advocate and the co-author of Gut Feelings, spent about a decade battling severe GI symptoms and visiting a slew of doctors before she finally found a specialist who diagnosed her with a functional gastrointestinal disorder.
“When you’re in a situation where your doctor is dismissing your symptoms, it’s easy to get flustered and blank on specific concerns,” she says.
The fix: Write it all down.
“A journal of your symptoms can help doctors identify patterns or clues, especially if you have a more chronic or hard-to-diagnose symptom,” says Sharma. “It’s also a great way to maximize the little time you might have with a busy doctor.”
What to include in your journal:
- your symptoms, when they began, and how often they occur
- what makes your symptoms worse or better
- any factors that might impact your symptoms (such as your diet, medical history, medications you’re taking, conditions that run in your family, or significant stressors in your life)
- questions you want to ask about your symptoms, diagnosis, treatment, additional therapies, and coping tools
- any other concerns you want to address
“During your appointment, be an active listener and consider taking more notes or asking if you can record the session to make sure you don’t miss anything important,” suggests Hempstead.
You can also ask for copies of your health records for your own safekeeping, per the Health Insurance Portability and Accountability Act (HIPAA).
When Stephanie Chuang, founder of The Patient Story, was undergoing chemotherapy, she had a wonderful but incredibly busy medical team. She also learned that everyone is vulnerable to falling into cracks in the system.
The port she had for chemo infusions and blood draws was supposed to be hassle-free, but it never felt right. She didn’t want to seem like a “difficult patient,” so she *timidly* asked for help — and was repeatedly met with disbelief.
But she was right: Something was wrong. This became clear when a misfit needle caused her skin to tear and develop a serious, painful infection.
“I wish I had listened to my body and voiced my concerns more because only I live with my body,” Chuang says. “As patients, we have to learn that our voice matters, that we don’t need to try to be a ‘good patient’ who only listens, and that the only person who will always fight for us is us. I’d encourage other women to feel confident in speaking their minds and asking all of the questions they feel are necessary.”
Another important part of self-advocacy is surrounding yourself with people who can speak for you when you can’t.
“Someone can and should always step up,” says Eva Woolridge, an award-winning photographer and public speaker based in Brooklyn. When Woolridge ended up in the hospital with painful ovarian cysts, her roommate advocated for her throughout the day.
Woolridge’s dad was also a key player in ensuring that her doctor didn’t unnecessarily remove her ovary in light of a long history of doctors giving women of color hysterectomies without their consent.
“Beyond family and friends, connect with local and virtual community groups like churches, nonprofits, professional patient support and advocacy groups, and social workers for more help,” adds Lauren Freedman, a patient advocate and host of the podcast “Uninvisible Pod.”
When Amy Motroni, a certified baby and toddler sleep consultant, was trying to conceive with her husband 4 years ago, an infertility doctor pressured her to start in vitro fertilization (IVF) right away. But she knew she had other treatment options, like adjusting her hormone levels with medication she’d taken in the past and tracking her cycle more closely.
When her doctor told her he didn’t think that would help, she continued to push for it until he agreed and wrote her a prescription. Three months later, Motroni was pregnant with her daughter.
“It could have been a fluke or a miracle, but I am so glad I advocated for myself and tried it my way first,” Motroni says. “If you have a gut instinct on something, speak up. Doctors know a lot, but they don’t know your body or your history as well as you do.”
“When you’re seeing a whole bunch of different specialists, they don’t always talk, which can make the diagnostic process take much longer,” says Isabel Mavrides, a Latina disability justice activist and organizer.
After a serious spinal injury, surgery, and ever-worsening pain, Mavrides sped things up by speaking with her entire team of doctors to get them to communicate. After that, she got the scans and tests she needed and was diagnosed with a genetic condition they could begin to treat properly.
By the time Hempstead was diagnosed with metastatic breast cancer, it had spread to her lungs and liver. Her doctor told her she wouldn’t live a year and refused to discuss or sign off on any clinical trials or experimental treatments. So, Hempstead fired that doctor and found a new one who provided her with high quality treatment options and rallied for her throughout her cancer journey.
“You have a right to have a doctor that is on your team and that will fight for you,” she says. It might take more than a second, third, or fourth opinion to get the answers you need, but keep fighting for the care that you deserve.
If you suspect that a medical professional is biased against you, has discriminatory practices, or isn’t treating you with respect, report them and find another doctor.
When Erica Hernandez’s doctors dragged their feet on confirming her cancer diagnosis, she emailed the office to notify them that they were causing unnecessary stress with their lack of communication and she was filing a complaint. Shortly afterward, she finally got her diagnosis and started treatment.
“Ask to speak to the supervisor and see if they have a formal complaint process,” says Hempstead. “Go to the top — whether that’s the CEO, a patient relations department for a hospital, or your governor and mayor for a state-run healthcare provider.”
No matter what level of apprehension you might have about your lack of knowledge regarding your healthcare journey, it’s imperative that you require your doctor to work at your pace. The process is too important for you not to be fully involved and informed and get the level of care you expect.