I believe that one of the ways that human beings can survive adverse experiences is through story-telling. My master’s thesis investigated how people in marginalised groups can maintain self-esteem levels through the development of group-narratives, or shared stories that reflect group-characteristics.
Little did I know how relevant it would become for me.
When I was 27, I became very unwell; Cyclical fatigue, nausea, many different constellations of pain, food sensitivities, inflammation, bleeding, bloating. Over the following 13 years, I sought help from doctors who blamed my symptoms largely on anxiety, lifestyle or stress. Any number of potential factors were ascribed blame, aside from a physical cause.
Medical misogyny is like a death by a thousand cuts, it is not just one comment by one insensitive doctor.
Medical misogyny means having to strategise before going along to medical appointments. It is trying to negotiate to get specialist referrals from a GP who is increasingly skeptical of the need to do anything for you. It is trying not to feel crushed when your GP looks annoyed when they see you walk into their room.
It is finding new GPs when you finally give up on being treated like a nuisance by your old one, and when you see the new GP it is trying to put your best foot forward so as to appear as a “good patient” and not like a drug-seeking doctor shopper or a malingerer.
It is feeling crushed when you realise you are being treated like a malingerer. It is adjusting how and what you say about your symptoms in attempting to have them taken seriously.
It is hiding that you’ve been researching your symptoms on the internet.
It is living in alarming pain and realising that no doctor is alarmed in the way they should be.
It is realising that you are making doctors angry because you keep coming back to them.
It is experiencing pain so excruciating that you wonder if you are dying, but not calling an ambulance because the risk of being humiliated rather than treated is far too high.
It is starting to dream of being diagnosed with something, anything, because you are desperate and having a diagnosis feels like a golden ticket.
It is being asked if you had a happy childhood or if anyone in your family has had psychosis and then going home with your pain untreated.
It is wondering if maybe you are dying from some rare disease because no doctor seems to understand and doctors “know everything”, so what the hell is going on?
It is strategizing to see a female doctor because maybe they’ll believe you and approach your symptoms with curiosity rather than an eye-roll. It is realising that it doesn’t altogether matter whether your doctor is male or female.
It is all of this, on repeat, for 13 very long years.
In my quest to understand what was happening to me, I scoured the internet for similar stories. In 2015, I began to see stories trickle out about endometriosis, with each personal story that was shared contributing to the development of a collective understanding of the experiences of people with endometriosis. It piqued my interest, there were similarities I could identify with. So in 2017, I was able to summon the strength to convince an ob-gyn specialist to provide me with a laparoscopy that he did not think I needed. He basically said he would humour me by giving me one. When I woke up from the anesthetic, he very sheepishly gave me a diagnosis of endometriosis. Thirteen long years after I first went to a doctor, I was finally given access to treatment for debilitating pain.
In 2019 I read Gabrielle Jackson’s book Pain and Prejudice; which shares horror stories of debilitating pain, of being told the pain was in our heads and of the experience of delayed diagnosis. It explored and identified the foundational misogyny underpinning our healthcare system. It detailed the collective narratives around endometriosis and related disorders that are now well established around the globe. Without these stories shared by other women, I might not have received a diagnosis myself. It was equally devastating and transformative to realise that I was far from being alone.
Change is underway in Australia. Stories have been shared, awareness has grown, we have a new National Women’s Health Advisory Council and plans for Endometriosis and Pelvic Pain Clinics. However, in our haste to improve things for the next generation, we must not forget that damage from discriminatory exclusion from medical care has already been sustained by many people with endometriosis and related disorders.
Endometriosis expert Dr Iris Orbuch describes in her book some of the outcomes of delayed diagnosis, which include an increased likelihood of chronic pain, pelvic dysfunction, permanent organ damage or loss, infertility and disability. Not to mention, the easy-to-imagine loss of lives of people with undiagnosed or under-treated endometriosis to substance abuse and suicide.
If we want gender equality we must do more to understand the needs of this population who have sustained direct damage from the old-fashioned belief that a male body is all medicine needs to understand to treat everybody.
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