When your body “breaks the rules,” your life is at risk even when in the care of medical professionals. This piece contains links to resources full of information you need to know to be your own advocate when seeking medical care (scroll down towards the bottom to skip editorial and go right to the links).
Back in 2008, I saw a rheumatologist for what ended up being my diagnosis of Ankylosing Spondylitis. I had finally been referred to Dr. Lynda Lee by a female physician’s assistant, to address the pain and stiffness I had been experiencing.
I had been suffering from these symptoms for years, but had given up on getting an answer to after being dismissed over and over by various doctors (mostly but not all male). I had grown weary of being told “Oh, not sure, go home and take Advil if it comes back. Which it always did, which always led to the same response. Why bother?
My PA who I was seeing for some garden-variety issue I can’t recall, asked how things were going otherwise, and for some reason I decided to mention the achiness, which led her to respond, “Oh. That’s not right. That’s not right at all, have you seen anyone about this?” I let her know that I had several times, only to be dismissed, and I had given up. Her response was, “Ok, you’re going to go see Dr. Lee. She’s “the MAN.”
Dr. Lynda (Yong Sook) Lee was, in fact, “the man” though for obvious reasons I find that designation annoying now. But I totally got the intent: She was the one to go to for answers.
After I received my diagnosis, I returned to Dr. Lee’s office with questions: Why did she diagnose me with A.S.? None of my symptoms seemed to match what I saw in pamphlets or read online.
She gave me a sad yet amused look and said, “Oh, that’s because women’s bodies break the rules.”
Dr. Lee went on to tell me how almost every study that had been done in her field, which was auto-immune issues, rheumatoid arthritis, ankylosing spondylitis and others, had been done on men. Men’s symptoms were what were recorded as medical fact. Men’s responses to medications were what were recorded as medical fact. Because men were the default.
Women’s bodies had “too many variables” to make us “good candidates” for study, so they didn’t bother.
Our menstrual cycles made us “inconsistent” and any studies wouldn’t yield a “consistent” result, so they didn’t bother.
Women are dismissed at an alarming rate because our bodies are too confusing for medical personnel who are supposed to be trained on how to fix what is ailing us, who are supposed to be the ones that save our lives.
I am very fortunate, actually, that my medical issues are, for the most part, “only” auto-immune and that, thus far, I haven’t experienced a heart attack or a full-blown stroke.
An alarming number of women – and trans men cannot be excluded from this conversation as they are subject to the same issues and a whole ‘nother level of bias that puts them at risk of medical neglect – die every year of heart attacks because our bodies “break the rules.” We don’t exhibit symptoms like “the default.”
Women often experience a heart attack without chest pressure, rather, in place of the tell-tale chest pressure that men often experience, our symptoms can include shortness of breath, pressure or pain in the lower chest or upper abdomen, dizziness, lightheadedness or fainting, back pressure or extreme fatigue.
But we didn’t know this for the longest time because our bodies weren’t studied, and our symptoms don’t make the cut in most medical resources that are available to us. Still.
And between the fact that too many of us ignore these symptoms because they don’t seem “serious enough” to seek out medical attention and the fact that when we DO seek medical attention, we’re sent home to “rest,” it’s more important than ever that we are made aware of the symptoms that “break the rules” so we can monitor our own health and so that we can dig our heels in when medical personnel disregards our symptoms and say, “No, I’m not leaving here without an answer.”
We need to take a very active role in our own health and our survival until a day comes where we aren’t just an alternative to the default. Yes, it’s absolutely a failure of our medical system and our society that has is in a position where we’re dying because of that failure. The onus should not be on us. But until things change, we need to be our own advocates.
There are links below that supply a lot of important information for us to educate ourselves. This list is incomplete, but it’s a good place to start as-is.