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As a woman who deals with chronic illness, I often think about how lucky I was to be listened to when I first started experiencing symptoms. I was always referred to the appropriate specialists, who then took my experience seriously and suggested different treatments, allowing me input (though learning to advocate for myself was still a necessary skill that would take years to refine).
It’s always been saddening and frustrating, though not shocking, to hear women recount their experiences of not being listened to in healthcare settings. The worst I had at first was being told that a long-term health issue that anyone could have seen in my medical record (and a common symptom of my diagnosed conditions) was a “normal part of being a woman,” and having a healthcare provider I had a lot of respect for project their own “sadness” onto me in a discussion of a potential hysterectomy.
Even being aware of how often women are not believed when bringing up health concerns, the privilege I’d experienced so far set me up for whiplash this year as I began a string of unpleasant interactions with a new primary care physician. It started with something minor, an acute worsening of chronic symptoms, and she told me she thought I had depression, and maybe even anxiety – and promptly added these conditions to my medical record, despite me countering her suggestions during the appointment. At no point in this conversation did we discuss my mental health experience. When I came in several months later with concerns of chronic pain, depression was once again thrown out as a potential cause. When I suggested my own suspicion of the cause, it was shot down and I was told, “I don’t know what you have, maybe mono,” despite me explaining that my symptoms had started after a previous infection. A blood test revealed it was not, in fact, mono, but we made no moves to rule out my initial suggestion.
Even when my doctor ordered blood tests and wrote me a medical letter for accommodations, it was only after asking me pointed questions about what floor my bedroom was on at home and asking me to walk down the hall with her. It felt like my healthcare provider was trying to catch me in a lie about the limitations my pain was causing me, rather than working with me and expressing curiosity about what might be going on. When the blood tests found vitamin deficiencies, I continued to feel unheard as I was asked, week after week, if I felt better (I never did), as if it was a given that they were the cause of my symptoms.
Other than the blood tests and subsequent supplementation, I was told to “give it six months,” after which point they would consider referring me to a neurologist. This caused me so much frustration, as I’d done the right thing in bringing my new symptoms to the attention of a medical provider only to be told to give it time. Additionally, as many chronically ill folks know too well (at least in the U.S.), the wait to see a specialist alone can often take several months, and can often result in an intolerable wait to find answers in treatment. Waiting is inevitable in our healthcare system, so being told to wait before a referral and delaying any clarity I could gain was upsetting. The inevitable wait came to pass when I realized, after these interactions, that I did not want my health in the hands of a doctor who wouldn’t take my concerns seriously, or really listen to what I was saying. A primary care physician who came up in my research with experience in treating my suspected condition had an appointment opening months away, during which time my symptoms only worsened.
Women’s health concerns being dismissed is a recognized issue in healthcare, and compounds for women in marginalized identities: Black women, fat women, disabled women, and women who exist at the intersection of these identities and beyond, must navigate additional layers of stigma and discrimination. The disturbing pattern of women not being listened to about their own health experiences isn’t just an inconvenience, it’s dangerous and at times deadly. That this is a researched issue makes me cautiously optimistic, and I hope that medical professionals continue to work to confront their biases and center their patients when it comes to their care.