The medical community have known for a century that women are living in constant pain. Theyve done nothing about it
Its frustrating to have questions that dont get answered. Its altogether disturbing to find out that those questions havent even been asked.
When I was diagnosed with endometriosis at age 23, I didnt know enough to ask the right questions. I assumed my gynaecologist had all the answers, and listened carefully to his thoughtful explanations. I thought I knew it all. Or at least that he knew it all. But I was wrong.
It was only after more than a decade of feeling weak, second-rate, wimpy and writing myself off as a hypochondriacthat I started to formulate the questions that needed to be asked. This time the questions werent about what was happening to my body. They were about how there could possibly be such a lack of knowledge about a disease that has been in the medical textbooks for more than a century.
A century of diagnosis and medical science still has no idea what causes endometriosis or how it works, and we are no closer to a cure. How could this possibly be? And while there are many doctors working in the field who are making a huge difference to the lives of people with endometriosis, there are many more who remain ignorant of the disease, who still push tired old myths about its cures, and who treat people with the disease as hysterical.
Not long after I started looking into this I discovered the problem was worse than I even imagined. As I write in my book, Pain and Prejudice,women wait longer for pain medication than men, wait longer to be diagnosed with cancer, are more likely to have their physical symptoms ascribed to mental health issues, are more likely to have their heart disease misdiagnosed or to become disabled after a stroke, and are more likely to suffer illnesses ignored or denied by the medical profession.
Most shockingly of all, many women are living in constant pain and dont know that its not normal; they dont appreciate that they dont have to live like that at all.
I discovered that there are 10 chronic pain conditions that predominantly affect women which have very similar symptoms; and that once a person has one, theyre more likely to accumulate others. Endometriosis, fibromyalgia, chronic fatigue syndrome, irritable bowel syndrome, painful bladder syndrome, migraine headache, chronic tension-type headache, temporomandibular joint disorders, chronic lower back pain and vulvodynia affect at least 50 million US women alone.
I discovered that some of these pain conditions have a high rate of co-occurrence with autoimmune conditions including rheumatoid arthritis, lupus, Sjogrens syndrome and thyroid diseases.
You know what else I discovered? That these conditions are all beset by delayed diagnosis; that a high proportion of women and gender-diverse people eventually diagnosed with these conditions will first be told they have a mental health condition, or are too concerned about their health.
You know what else I discovered? That many of these conditions can be well-managed if caught early.
Why are women still being treated as hysterical, overly emotional, anxious and unreliable witnesses to their own wellbeing?
Why do doctors still treat their patients who are female, people of colour or gender-diverse differently to their white male patients?
Why dont they trust us?
The answer turns out to be quite simple. They dont really know much about us.
As Dr Janine Austin Clayton, the director of the US Office of Research on Womens Health, told the New York Times: We literally know less about every aspect of female biology compared to male biology.
To find out why that is, I had to travel back centuries. From the beginning of medicine, womans difference to man has marked her as inferior. In ancient times, it was the womb the most obvious point of difference that was thought to be the corrupting force, causing all manner of ills experienced by women. Plato characterised the womb as a voracious animal wandering the female body and sucking its life force. In the early modern era, medicine switched its attention to the nervous system, blaming illness among women on weak nerves. In the early 20th century, when the endocrine system was discovered, raging hormones became the chief source of blame, intermittent with our corrupted mental states.