This is an edited extract from the book “Pain and Prejudice” by Gabrielle Jackson, published by Little, Brown.
For much of documented history, women have been excluded from medical and scientific research and clinical trials, so that now we essentially have ended up with a healthcare system, amongst other things in society, that has been made by men for men. This is what Gabrielle Jackson found and has described in her newly published book “Pain and Prejudice”. After suffering with endometriosis for 14 years, the author could not believe how little had changed in the treatment and knowledge of the medical condition – how could there be such a lack of knowledge about a disease that has been known about for more than a century. It must of course be acknowledged that there are many doctors who are making a huge difference to the lives of people with endometriosis, but at the same time there appear to be many more who appear to remain ignorant of the disease, who still push tired old myths about its cures. In 2015, she launched an investigation into the condition and invited thousands of women to get in touch to tell their own stories. However, the situation was far worse than imagined. To begin with she found that although 1 in 10 women worldwide have endometriosis, the condition attracts funding at only 5% of the rate of diabetes.
But that was only the start. The author came across a Dr Kate Young, a public health researcher at Monash University in Australia, whose research has uncovered how doctors fill their knowledge gaps by suggesting there is a “hysteria” element when discussing ‘difficult’ women, referring to those for whom treatment was not helpful or who held a perception of their disease which was different to their clinician. Dr Young found that “Rather than acknowledge the limitations of medical knowledge, it appears that medicine expected women to take control (with their minds) of their disease (in their body) by accepting their illness, making ‘lifestyle’ changes and conforming to their gendered social roles of wife and mother. Moralising discourses surround those who rebel; they are represented as irrational and irresponsible, the safety net for medicine when it cannot fulfil its claim to control the body.”
In her work, she showed how endometriosis patients are often viewed by their treating doctors as “reproductive bodies with hysterical tendencies”. In fact one gynaecologist is reported as saying, “Do mad people get endometriosis or does endometriosis make you mad? It’s probably a bit of both.” Of course nobody is suggesting that endometriosis is not a real disease, or is somehow imagined, but there appears to be a general feeling in medicine that a woman’s reaction to having endometriosis is somehow hysterical, especially when symptoms continue after treatment has been offered, which is common.
Furthermore it does not appear to stop with individuals suffering from endometiosis. One male GP is reported as saying, “I’ve never had a fibromyalgia patient who wasn’t batshit crazy.”
It is only fair to point out that a lot of research has been undertaken that appears to reinforce the hysteria theory. However, who was behind the design of the clinical research? Yes, men.
Not only are doctors, scientists and researchers mainly men, but most of the cells, animals and humans studied in medical research have also been male. So in essence, most of the medical advances we have seen comes from the study of male biology. In fact in 2014 the US Office of Research on Women’s Health is on record as stating, “Doctors literally know less about every aspect of female biology compared to male biology.”
So why is this?
From the beginning of medicine, a woman’s difference to man has marked her as inferior. In ancient times, it was the womb that was thought to be the corrupting force, causing all manner of ills experienced by women. Then medicine switched its attention to the nervous system, blaming illness among women on “weak nerves”. In the early 20th century the endocrine system was discovered and it was the turn of “raging hormones” to become the chief source of blame, intermittent with “corrupted mental states”.
For many, and not only in medicine, a woman has been seen purely as a means for reproduction, ie women have reproductive organs, therefore they are for reproduction, and that it is their main purpose in life. Even after the discovery of the endocrine system some of those in medicine still appear to have persisted with the belief that all other organs and functions would operate in the same way in men and women, therefore there was no need to study women specifically. There were also those who said that the menstrual cycle, and varied release of hormones throughout the cycle, introduced too many variables into a study, therefore women could not be studied.
This has therefore resulted in diseases presenting differently in women often being missed or misdiagnosed, whilst those affecting mainly women remain largely understudied, undertreated and frequently misdiagnosed or undiagnosed. Whilst saying this, it is of course acknowledged that great strides have been made in breast cancer and obstetrics. These areas of medicine are not without their problems but there is no doubt advancements in these fields have saved millions of lives of women.
In the 1980s, a group of female scientists teamed up with some US Congress members to draw attention to the discrepancies in medical research and the effect on women’s health. This resulted in the formation of the Society for Women’s Health Research, which campaigned for better health research in women. In 1985, a report by the US Public Health Service Task Force on Women’s Health warned that “the historical lack of research focus on women’s health concerns has compromised the quality of health information available to women as well as the health care they receive”. Their campaign drew attention to some of the absurdities that had resulted from the male bias seen in medical research. These absurdities were summarised in the book entitled “Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed and Sick” written by Maya Dusenbery and published by Harper Collins in 2018. One example is that, in the early 60s, it was observed that women tended to have lower rates of heart disease until their oestrogen levels dropped after menopause and research was carried out to see whether oestrogen supplementation was an effective preventive treatment. However, the study enrolled 8,341 men and no women. Another study looked at how obesity affected breast and uterine cancer. Again the study did not enrol a single woman.
The examples continue. The study that concluded taking a daily aspirin may reduce the risk of heart disease involved 22,071 men and zero women. And the study which looked at whether dietary change and exercise could help prevent heart disease was conducted in 13,000 men only, no women.
She also found that:
· women are half as likely to be diagnosed and treated for a heart attack as men and twice as likely to die six months after discharge,
· 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,
· that over half of women who are eventually diagnosed with an autoimmune disease will be told they are hypochondriacs or have a mental illness.
It is not only in medicine where there appears to be a male bias. It also extends to drug trials. Between the 1970s and 1990s, a policy was in place that women of “childbearing potential” should be ruled out from taking part in early-stage drug trials. The reasoning behind this was that since women are born with all the eggs they will ever produce, they should be excluded from drug trials in case the drug proved toxic and impeded their ability to reproduce in the future. Men, on the other hand, constantly reproduce their sperm, therefore they have a reduced risk.
The result was that all women were excluded from drug trials, regardless of their age, or wish or ability to bear children. Since the 1990s, more women have been included in clinical trials but researchers have not always analysed results by sex and/or gender. An example of this is that although approximately 70% of chronic pain patients are women, 80% of pain medication has been tested only on men.
It is also of note that of the 10 prescription drugs taken off the market by the USA medicines regulatory authority, the FDA, between 1997 and 2000 due to severe adverse effects, 8 were because they caused greater health risks in women. A “serious male bias in basic, preclinical, and clinical research” was judged to be the cause.
To make matters worse, medical students do not seem to be made aware of this knowledge bias. It does not appear to be taught in medical schools that almost everything known about human biology comes from the study of men.
The author concludes by stating “And maybe, just maybe, the women crowding their (the doctors’) waiting rooms – the women who they can’t help – are there not because they’re hysterical or making it up or like being sick or want the attention, but because they are sick and in pain, and medical science has no answers for them.”