10 Years to Diagnosis (If You are a Woman).
Something really weird happened this summer. I am talking really weird. My husband got sick and his doctor called him to see how he was feeling and to talk about next steps to diagnosis.
His DOCTOR CALLED HIM!
I told my husband that his is really amazing. Doctors do not call. They really don't. And calling to consult about next steps? No way. At least not for me. At least not for the women I have talked to, an experience backed by research on the gendered discrepancy in pain management.
I called Fionna (my daughter and coauthor of this blog) to tell her about this amazing news. "No way," she said." That is not even possible."
My husband seemed slightly baffled by my response. In his defense, Tom rarely gets sick and even more rarely goes to the doctor, so he does not understand basic medical etiquette. But his response is instructive: Why shouldn't the doctor call him?
Why not indeed.
A Woman Who is Sick is Often Assumed to Have a Mental Illness
When I go to the doctor I feel pretty good when the doctor takes me seriously, sending me for the occasional test or X-Ray. It is rare for a doctor to seem even mildly curious about what ails me.
Here is an example. On September 12, 2001, the balls of my feet swelled up and I could not walk. That was terrifying. I went to the doctor who ordered tests and they came back positive. He sent me to a rheumatologist, who tested me again. At this point my feet were better and the test results dropped below the "disease level threshold." Over the next few years, my tests ping ponged between positive and below the threshold.
So far so good.
I moved, changed doctors, and immediately told my new doctor about the reoccurring symptoms and the positive tests. His response? "Those tests were a long time ago." I disagreed. He asked me about my mental health.
It Takes a Long Time For Women to be Accurately Diagnosed
Did you know that it takes longer for women to be diagnosed with a medical condition than men? Did you know that the original diagnoses of women is often wrong, requiring rediagnosis about 40% of the time? Did you know that the original (wrong) diagnosis for women is very often that the woman is suffering from a mental health issue rather than a physical issue? As a result, the average time to diagnosis for women, when considering all conditions, is 4 years? After 4 years of pain and discomfort, and doctors telling you that it is all in your head, you start to think you might indeed be crazy.
Women's Diseases and Time to Diagnosis
Women's diseases are the worst when it comes to diagnosis. There is less money spent on research when a disease is determined to be a woman's disease. Not only do doctors know less about these conditions, but even doctors that should know because they specialize in, say gynecological care, misdiagnose even well known conditions.
Endometriosis provides an important example of this "it is all in your head" misdiagnosis. Endometriosis is a well known condition with distinctive symptoms that cause severe pain and eventually can lead to the inability for women to sustain a pregnancy. Despite the distinctiveness of this condition, it takes, on average, 10 years to be diagnosed.
10 Years to Diagnosis. If you are a Woman.
Fionna was recently diagnosed with endometriosis. The frustrating part of this is that we both knew that she had endometriosis. Only a few conditions can cause that type of fierce pain for women. Although we knew. Although she told her doctors she thought she had endometriosis, they acted as though she was being dramatic about the pain and that it was not real. Here is Fionna's story:
The first time I found myself at the doctor for stomach pain, I was freshly 18 years old. The doctor correctly guessed that my uterus was causing me constant pain and prescribed birth control. Just a few months later and although I still complained of, albeit, somewhat milder stomach pain, my concerns were dismissed and thus began my trepidatious journey wandering from doctor to doctor who worked to assure me that my pain was nothing short of normal. I am now 25 and after seven years have finally received a diagnosis for something that has been dismissed as an insane notion until now.
Now, I suppose I should consider myself lucky that I received my endometriosis diagnosis after a mere seven years. Most uterus bearing people have to wait a whopping ten years to hear that the lining that should be present on the inside of their uterus is actually growing on their ovaries and their fallopian tubes and their organs and their intestines and... you get the point.
For those of you who may not be familiar, endometriosis is a lovely little condition that comes with some "exciting" side effects. Here are a few:
Chronic pelvic pain
Painful periods (can include throwing up, fainting, excessive bleeding, etc...)
Pain during or after sex
Painful urination or bowel movements
The list goes on...
At this point you may be thinking, but surely with all of those symptoms a diagnosis should be easy to come by. Right?
It was only after seven years of begging that I was finally taken seriously by a doctor, and to be perfectly honest, I almost did not see that doctor. When it takes that many years to receive a diagnosis you start to question your own sanity. Since I have spent almost every day of my life in pain for years and was told by numerous doctors that it was normal, I began to assume that I had deluded myself into phantom pain. I spent my time telling myself and others that " it really wasn't that bad." But it was and it is.
When I received my diagnosis the first thing I felt was relief. Relief that I wasn't crazy, that my whole life hadn't been some insane delusion but that relief quickly devolved into something else entirely. I felt anger at every healthcare provider that had led me to this point. I felt fear at the solution which was to put my 25 year old body through temporary menopause. Above all I felt sad that even though the doctor was certain that I have endometriosis, I still could not shake the feeling that maybe I was crazy after all.
When it comes down to it, our healthcare system does not take women's health seriously. There is an unnatural suspicion around women's bodies that makes pain and even death easier to come by simply because we are women. Day after day women are dismissed because their doctors would rather cling to the antiquated belief that hysteria has gripped their frail bodies. It is time to dismiss these long held notions and believe women.
What can we do? What do we expect to change?
Doctors need to be trained to work with women patients.
Doctors need to recognize the biases that drive not only their own diagnosis, but the entire research and medical industry that guides their work. We recognize that it has become politically incorrect to acknowledge systemic bias, but come on. Some honesty about systemic discrimination is a necessary step to addressing the gendered (and race, and age, and social class, etc.) discrepancies that undergird our medical industrial complex.
Governments still needs to invest in research into women's diseases.
Finally, we all need to believe women when they say they are in pain. Women can handle a lot of pain (child birth, anyone?), so when they acknowledge that they are experiencing pain, you know it has to be bad.
Fionna Clark is a Historian/Artist with a focus on historical clothing construction.
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