5 ways to get around medical gaslighting and get the care you deserve
Over the last few decades medical advances in everything from genetic testing to targeted therapies to less-invasive surgeries have had a positive effect on the lives of people impacted by breast cancer. Yet, in the U.S., if you are a woman, are not white, not wealthy, or not cisgender or straight, there is a good chance you are not receiving optimal health care.
While there are many barriers to getting the best care, one significant obstacle women continue to face is “medical gaslighting” — the act of someone in power dismissing or ignoring a person’s legitimate symptoms and concerns, often as irrational, hysterical, or uninformed. Research on such disparities in care between women, especially minorities, and men is growing — and the findings are troubling at best for any woman seeking care.
One study found that women who went to the emergency room complaining of severe stomach pain had to wait 33 percent longer than men with the same symptoms. A recent study found that women and people of color are typically more likely to experience medical gaslighting due to systemic disparities. You can hear stories and conversations from Black women about their breast cancer diagnosis, experiences with implicit racial bias and health inequalities, and how they overcame these obstacles to receive standard of care in LBBC’s 2021 Our Voices, Our Stories.
If you feel you are being dismissed, misdiagnosed, or simply not heard by your care team, there are many things you can do. Here are a few:
Come prepared to tell your story. In the days or even weeks leading up to your appointment, pay close attention to your body, write down your concerns and symptoms — including frequency and duration — and be ready to put them into context for your doctor. Track your symptoms in a notebook, or with LBBC’s When to call your doctor worksheet.
Speak up. Many people feel uncomfortable asserting themselves to doctors, but the importance of speaking up cannot be discounted. Take it from former breast cancer advocate Francess Register-Joyner, who in 2018 advised our community to, “Buckle up, write [your questions] down on your little question list, and ask!” For more tips on talking with your healthcare provider, watch Frances and a panel of breast cancer advocates and experts in LBBC’s Breast Cancer360 video Lost in translation: Effectively communicating with your healthcare provider.
Reframe questions. If at first your symptoms are ignored, try asking about them in a different way. For example, ask, “What might this be?” Then, ask, “What do I do if these symptoms worsen?” Reframing your questions in this way may help your doctor to pause and consider all the options.
Bring a friend. Bringing a trusted friend to your medical appointments can be incredibly helpful as you digest information about diagnosis and treatment, but also as a witness to the conversation, and a vocal advocate for you, if needed.
Find a new practice, a doctor you trust. If you feel your provider is not taking your symptoms seriously, you don’t have to settle. Instead, seek out another practice for a second opinion. After feeling she was being treated like a statistic, not an individual, by her oncologist, Shanette Caywood says, “If you’re with a doctor or provider who you don’t care for and you feel like you can’t talk to them — if you don’t feel comfortable — you definitely need to say something." Read the full story of how Shanette successfully switched her care team in Changing your doctor when the fit isn't right.
Still not getting what you need? Contact LBBC’s Breast Cancer Helpline (888) 753-LBBC and talk with someone who has been there.