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    Time for ‘Me Too’ in Women’s Healthcare

    By John Lewis

    It’s Lunar New Year, and every year at this time our thoughts turn to our cousin Jackie, one of Stuart’s cousins on the Chinese side of the family.  Jackie was a strong, independent woman and a maverick, given that she became a successful Chinese American female dentist decades ago, at a time when the profession had few women.

    And Jackie was a matchmaker of sorts for us. Stuart was living in Jackie’s extra basement bedroom in her Diamond Heights home, when Stuart and I met 31 years ago. I met Jackie shortly after Stuart and I started dating, and the next time I saw Stuart he told me: “Jackie has decided she likes you.” After Stuart and I had been together for nine months, Jackie told Stuart he needed to move out of her spare bedroom because her elderly parents were coming for an extended visit. I always thought she had actually decided it was time for us to move in together.
    Jackie was an amazing dentist and a great older sister too, inviting her younger brother to join her practice after he finished dental school. Our trips to the dentist were a family affair and an opportunity to share and catch up on family news, all while we got our teeth cleaned or cavities filled. One visit 24 years ago was particularly memorable because Jackie, her dad, Stuart and I had decided we should start an annual family Chinese New Year party with all the many relatives, where we savored the family’s traditional New Year recipes, passed on from generation to generation.

    Jackie and I decided we would cook the dinner together. I’ll never forget how—with my mouth wide open in the dental chair and Jackie poking at my teeth and gums with her instruments—Jackie explained many elaborate New Year recipes with myriad ingredients, such as ginkgo nuts, wood-ear fungus, dried oysters, lotus root, and two types of fermented tofu. These were recipes that Stuart’s grandmother had passed on to Jackie’s mom, then to Jackie, and now to me. Our 24th annual family gathering will be this weekend.

    But unfortunately Jackie will be there only in spirit. Several years ago, Jackie began having persistent digestive problems that responded to none of the treatments her physicians prescribed.  Jackie’s physicians told her she had irritable bowel syndrome, explaining that she worried too much. Many months passed and Jackie’s symptoms continued to increase. As Jackie continued to urge her physicians to investigate her symptoms more fully, they finally discovered the truth. Jackie had late stage ovarian cancer that had metastasized to surrounding tissues. The cancerous tumors were putting pressure on her digestive system and causing the symptoms.

    When I learned the news, I realized that Jackie was not the first of our women friends to have unexplained digestive symptoms that physicians dismissed and misdiagnosed, but in fact were serious ovarian medical problems. A middle-aged friend complained of digestive problems to her physicians for months, and as with Jackie, her physicians dismissed her concerns, telling her she fretted too much. Eventually, they discovered a non-malignant ovarian tumor “the size of a grapefruit” was causing the problems.  Fortunately, after it was removed, she was fine. 

    The teenage daughter of another friend had severe abdominal pain with nausea, and when she went to the emergency room, physicians repeatedly asked her, among other things, if she were pregnant (which she was not). Much later, she finally got the correct diagnosis: one of her fallopian tubes was twisted, causing the severe pain and damaging an ovary.  

    In all three cases, physicians marginalized or dismissed the concerns of women, aged 14 to 70, who all ended up having serious ovarian-related medical problems. As an LGBTIQ person, I could empathize from my own personal experience, having had physicians not understanding or taking my health concerns seriously.

    After Jackie got the diagnosis, she asked me to be her health care power of attorney, attend doctor appointments along with her brother, and be with her during the final stages of the disease. Jackie was a very strong person. Indeed, she took no pain medication during her disease (except after surgery) until the last hours of her life. She lived each day to the most. I learned a lot from her. 

    One time during the later stage of the disease, Jackie, who also held a degree in public health, lamented to me that ovarian cancer is not a subject of sufficient public education and does not get enough media exposure. This is because of the fact that too many women are diagnosed with the disease in its late stages and do not have the time and energy to organize and advocate for better awareness, treatment, and diagnosis. 

    We agree. Because of Jackie, whenever I meet physicians, I urge them to investigate ovarian issues when women patients report digestive or abdominal problems that evade easy diagnosis. 

    We can do much more, too. I recently heard a caller to a public radio show remark: “I was blown away by the power of women raising their voices together with ‘Me Too.’ Maybe we should keep calling out the patriarchy and say ‘Me Too’ to all of the other injustices we face as women. I would love to see a ‘Me Too’ movement about how women are mistreated by doctors.” 

    When I heard the remark, I immediately thought of Jackie and our other friends. In the words of the movement, “Time’s Up” for the medical profession marginalizing women’s health concerns and costing lives.

    John Lewis and Stuart Gaffney, together for over three decades, were plaintiffs in the California case for equal marriage rights decided by the California Supreme Court in 2008. Their leadership in the grassroots organization Marriage Equality USA contributed in 2015 to making same-sex marriage legal nationwide.