This blog was written by Miri Rodriguez: speaker, author, storyteller, and Basser Latinos & BRCA partner.
I love being a woman. Being a woman is both powerful and vulnerable, beautiful and complex. Because our bodies are wondrously designed to give and nurture life, we have unique health needs that revolve around our sexual and reproductive abilities and functions, and this subjects us to a wide range of physical and emotional changes throughout our lives. Changes that a lot of times we tend to ignore, hide, or worse, can go misdiagnosed.
Despite comprising half of the population and controlling most healthcare spending in the US, women have been neglected in modern medicine. Historically most medical research and treatment focused on men, leaving women with a healthcare system that failed to fully understand or address their unique health needs. While regulations such as the NIH Revitalization Act passed in 1993 required women to be included in clinical trials, studies still show that women are underrepresented in medical research, which ultimately affects the quality and effectiveness of healthcare provided to them.
Hi. My name is Miri and I’m a BRCA1 mutation carrier.
I’m the first one in my family found to be a carrier of a BRCA1 gene mutation that could cause cancer in both breasts and ovaries, and the mutation can be passed to future generations. I’m also one of the rare patients that got diagnosed before there were any specific signs of cancer in my body. Or maybe there had been signs all along…
For years I suffered in silence every time my menstrual cycle came around. While most women will experience period discomfort some time in her life, I was part of the small but unlucky group that experienced extreme pain that disrupted my daily activities. But nobody knew. Because every single month I masked my severe pain and went on as if everything was OK and normal…until the symptoms got worse.
One day I started bleeding between periods. I knew something was deeply wrong. When I sought help from doctors, they attributed my condition to stress. This “stress” continued for the next four years and debilitated me to the point that I became anemic and could no longer tell the difference between my regular menstrual cycle and the irregular bleeding. My body was tired and my mind even more. Still, I continued with life as “normal”.
While it is difficult to give an exact percentage of women who get misdiagnosed due to healthcare bias, studies have shown that women's pain is often dismissed or not taken seriously by healthcare providers, which can lead to delayed or incorrect diagnoses. Women are also more likely to have their symptoms attributed to mental health issues, such as anxiety or depression, rather than physical health problems.
In specific areas of healthcare, research showed the following trends in misdiagnosis:
- Women are 50 percent more likely to be misdiagnosed following a heart attack.
- Women are 30 more likely to be misdiagnosed, or have their condition overlooked entirely, following a stroke.
- It takes approximately five years for autoimmune diseases to be correctly identified and diagnosed in women.
- Female-specific conditions (endometriosis, adenomyosis, fibroids, etc.) often take 10 years or more for accurate identification and diagnosis.
It was a female doctor that followed her intuition after hearing my health history and my family’s history of cancer. She suggested I take a BRCA genetic test after I explained my history of bleeding during a routine gynecological exam. When she called with the news that the test was positive, I sank in my chair and heard nothing more after that. My ears started ringing and everything around me became distant. I was trying to make sense of the words “cancer,” “percentages,” “family inheritance” but none of it made sense.
I was told I needed to speak to a genetic counselor. This counselor gave me a letter in English to share with my extended family on both maternal and paternal sides, informing them of the possibility of carrying the BRCA mutation and encouraging them to also get tested. However, my extended family resides in Latin America and speaks only Spanish, so I was given the daunting task of sharing this information personally with each cousin, aunt and uncle, sister, and parent - an overwhelming responsibility on top of processing my own diagnosis.
Healthcare experience disparities for minority groups remain a significant obstacle to achieving health equity. As of 2020, a simple solution such as translating a BRCA informational letter into Spanish to benefit the 62 million Hispanics residing in the United States, had not been taken into consideration.
I share my story as a reminder that healthcare disparities exist, and they have real consequences for real people. The neglect of women's unique health needs is not only unfair but dangerous, and it becomes even more critical for women of color and other underrepresented ethnic groups who face additional challenges to quality healthcare experiences, such as language barriers, discrimination, and lack of access to healthcare facilities. These barriers can lead to worse health outcomes, higher rates of chronic diseases, and even premature death.
To achieve health equity for women and minority groups, we need to address these disparities and take concrete steps to improve access to quality healthcare. This includes increasing diversity in healthcare providers and researchers, investing in community health programs, and ensuring that healthcare policies prioritize the needs of women and minority groups.
As individuals, we can also advocate for ourselves and our loved ones by speaking up about our health concerns and insisting on being heard and taken seriously by healthcare providers. We can also support organizations that are working to address healthcare disparities and promote health equity.
During my medical journey, I learned some valuable lessons. First, trusting my intuition was crucial. As the expert of my own body, following my instincts led to early detection of breast cancer. My first team of doctors had disregarded the immediate possibility of breast cancer and instead focused on ovarian cancer, given my breakthrough bleeding. Although initial mammograms and sonograms yielded normal results, after some conversations, my second team of doctors ordered a breast MRI, which revealed abnormalities in both breasts. Thanks to this early detection, I became a candidate for breast reconstruction following my double mastectomy. Your intuition will always guide you toward the optimal path for your wellbeing.
Secondly, advocating for yourself in your healthcare experience is essential. This involves interviewing doctors, dismissing those who don't make you feel comfortable, and asking all the necessary questions. I spent months after my diagnosis educating myself on everything BRCA and arming myself with information whenever I interviewed a doctor. One of the questions I always asked after they suggested a course of treatment was: If this was your mom, your sister, or your daughter, would you recommend this to them?
Lastly, if you belong to a minority group, speak out for healthcare equity. I’m so proud to know that by sharing my story and specifically mentioning my experience about not having a genetic counseling letter in Spanish, the Basser Center translated their BRCA genetics information. You can access this and other relevant information in Spanish here.
Raising awareness through sharing our experiences is a vital step towards healthcare inclusion and a great way to ensure more equitable experiences in healthcare for ourselves and for future generations. Our voices matter, and by using them to advocate for ourselves and others, we can create a more just and equitable healthcare system for all.
For more information on the Basser Center’s Latinos & BRCA initiative, visit our website.
The University of Pennsylvania Health System offers this story for general informational purposes only. Views expressed are those of the author or other attributed individual and do not necessarily represent the official opinion of the related Department(s), University of Pennsylvania Health System (Penn Medicine), or the University of Pennsylvania. Health information is provided for educational purposes and should not be used as a source of personal medical advice.