I hope the total honesty of the title was just the candor needed to hook you into reading more…because I have a LOT to say and no time to mince words.
So, let me get right to the point:
Countless research has proven that women are the overwhelming sufferers of chronic illness (ninety percent of those living with lupus are women). However, there is a long-standing history of labeling women with health issues as being “lazy” or “crazy.” Sadly, historical bias against women and modern medicine’s disliking of the murky waters of chronic illness makes it easy for women to be dismissed. Even today, women who endure the majority of autoimmune disorders (more on that later) find themselves being mishandled and their conditions misdiagnosed as psychosomatic, relational, anxiety-related, depression-induced, or caused by “that time of the month.”
Historical Bias:
Did you know the idea of “hysteria” is derived from the Latin root for uterus? Stay with me here because I am going to make a point. Dating back to the time of Cleopatra and the Ancient Egyptian Pharaohs, then being legitimized in the 20th century, “hysteria,” was seen as a mental condition affecting women. In fact, Sigmund Freud, the founder of psychoanalysis, described hysteria as ‘characteristically feminine.’ Other physicians of that time coined hysteria as a catch-all diagnosis for ‘everything that men found mysterious or unmanageable in women.’ Gender stereotypes during Freuds era didn’t help; after all, women were supposed to be submissive, even-tempered, meek, and sexually inhibited and any variance from these gender roles HAD to be dealt with. Thus, hysteria was coined as an interchangeable synonym for women who were “over-emotional” “promiscuous” or “deranged.” Legitimate physical and mental issues were categorized as ‘hysteria” if a doctor couldn’t or wouldn’t take a woman's health concerns seriously. It’s also worth noting how many of the problems physicians were attempting to fix in female patients with hysteria involved the treatment of get this, regular (marital) sex, marriage or pregnancy and childbirth - all ‘proper’ activities for a ‘proper’ woman. Yikes.
The idea that being born with a uterus may predispose a woman to this “condition” has methodically affected medical institutions for ages, leading to present day gaslighting and women being instructed that symptoms are “all in their heads.” Even today, though doctors may not admit or consciously connect their female patients to Freud’s theories, much of their education was immersed in those theories. Sadly, it wasn’t until 1980 (yes 1980) that “hysteria” was officially deleted from the Diagnostic and Statistical Manual of Mental Disorders. But, let’s face it, the bias this and many other misconceptions toward women with chronic illness left on the medical community was damaging, and is still impacting the treatment of female patients today.
“The thing is, if you are a middle aged woman with invisible illnesses and symptoms with no detectable cause, you are……hysterical. It’s all in your head.” -From ‘Hysterical Woman’ Blog, Written by @ArtfulBlasphemy
The point of all of this is to acknowledge that one of (if not the) core issues is physicians still tend to not validate a women’s experience of illness as legitimate compared to men. According to a study by University of Maryland Law School on medical gender bias, men are more often checked for physical and neurological conditions, while women are referred to get psychological evaluations and counseling. Likewise, women are significantly more likely to experience chronic pain than men but significantly less likely to receive adequate medical treatment. In fact, studies have found that women who visited the ER were approximately 25% less likely to receive appropriate opioid pain management and wait on average fifteen minutes longer to be seen than men. Even scarier, women are twice as likely to die when seeking help for a heart attack because of doctors dismissing their symptoms as a panic disorder.
“The tendency in many parts of medicine is, if we can’t measure it, it doesn’t exist, or the patient is cuckoo.” - Susan Block, Harvard Professor of Psychiatry and Medicine
These statistics are even more alarming when looking at women of color and the undertreatment of symptoms compared to white patients. A recent report by the CDC found that Black women in the United States were 2.5 times more likely to die from pregnancy or delivery complications than white women. Statistically, lupus is far more prevalent in women of color; in fact, recent studies suggest that 1 in every 250 African American women may develop lupus. Black women with lupus are more likely to have multiple organ involvement, but less likely to enroll in clinical trials due to historical biases, lower levels of social support, and higher levels of medical gaslighting.
“It is nearly impossible to adjust to your new identity when the medical community itself refuses to recognize the physicality of your disease-when you have no name for what ails you, or you are told it’s psychosomatic.” - Meghan O’Rourke
Without inclusive clinical trials, medical discoveries and treatments of diseases that are disproportionately female - will cease to advance. As author Meghan O’Rourke highlights in her book, “The Invisible Kingdom” “Until recently, most medical research was performed almost exclusively on cisgender men and male animals.” She goes on to state, “A 2011 study found that male mice were overwhelmingly used in 4/5th of the fields studied.” The New York Times echoed this data and noted that the reason for the disparity was that “the hormonal cycles of female animals would add variability and skew study results.”
Moreover, a US based study published in November 2020 highlighted a significant gender disparity in research funding. The paper, published in the Journal of Women’s Health, found that the National Institutes of Health “applies a disproportionate share of its resources to diseases that affect primarily men, at the expense of those that primarily affect women.” Dr. Janine Austin Clayton, a women’s health expert and associate director at the NIH, told the New York Times, “We literally know less about every aspect of female biology compared to male biology.” Double yikes.
Disproportionately Affected:
The sad truth is, women are suffering from a disproportionate number of physical health issues, and science is failing to find out why. 70% of chronic health patients are women, but 80% of participants in studies for chronic illness are male.
A wide range of long-term conditions are more prevalent in women than in men – including autoimmune diseases like lupus, as mentioned above (90 percent of those with lupus are women), but also chronic pain conditions like fibromyalgia, of which 80 to 90 percent of diagnosed cases are women, and Sjögren's Syndrome according to the International Association for the Study of Pain.
Though women are impacted more by poor health outcomes, more than 45% of autoimmune disease patients, according to a survey by the Autoimmune Association found, “have been labeled hypochondriacs in the earliest stages of their illness.” In her book on chronic illness, author Meghan O’Rourke interviewed approximately 100 women, all of whom were eventually diagnosed with an autoimmune disease or another chronic illness, and in her findings more than 90 percent had been encouraged to seek treatment for anxiety or depression by doctors who told them nothing was medically wrong with them.
In many ways, women face unique health challenges compared to men. Some are understandable and more straightforward- like chronic conditions that result from pregnancy and cancers of the female reproductive tract. However, some chronic diseases in women are more nuanced. For instance, fewer women than men smoke, but the negative consequences of smoking-related diseases have a greater impact on women. Other conditions, such as migraine headaches, affect women at a higher rate than men. Furthermore, according to a report by the British Medical Association, women live longer than men, but spend a greater proportion of their life in poor health. The question is, why?
Could it be in women that the larger number of genes originating from the X chromosome creates a far greater possibility of a larger number of mutations occurring? This puts women at a greater risk for the development of autoimmune diseases solely due to women having two X chromosomes, whereas men possess only one? Another possibility is that autoimmune diseases tend to affect women during major endocrine transitions, such as puberty, pregnancy, and menopause. These changes may impact the immune system in significant ways because of the interaction between hormones, the immune system, and other organs in the body. Since women experience more hormonal changes than men, this may be another theory as to why autoimmune diseases are more prevalent in women. Additionally, women typically mount a more vigorous immune response than men to infections and vaccinations (which leads to men having more infectious diseases than women…at least we have that going for us), producing higher levels of antibodies. In the case of autoimmune disorders, this trait seems to backfire.
“She said that being a woman means everyone hates your body, and your body hates you.”
-Kristen O'Neal
Whether it is genetics, epigenetics, or hormones, the propensity is there. So why not believe women when they know something is wrong? Why does it take longer for women to be diagnosed and treated appropriately? A study conducted by researchers at the University of Copenhagen discovered that women were diagnosed later than men in more than 700 diseases including 2.5 years later than men for cancer and 4.5 years later than men for diabetes.
Ann Miller, PhD and president and chief executive officer at the Society for Women’s Health Research (SWHR), began nearly three decades ago battling to get women involved in clinical trials at the National Institutes of Health to shine a light on this diagnostic dilemma (BTW women were excluded from trials three decades ago). She admits she is hopeful but wishes momentum would increase stating, “Some progress is being made. I’m impatient at the rate of change. But, yes, I’m absolutely encouraged.” She adds, “I think it goes to stigma, and under appreciating women’s health or dismissing women’s health,” she noted. “So when we ask why there are these disparities, I think it’s because we’ve ignored women’s health for so long.”
The Chronic Conundrum:
The National Library of Public Medicine has listed "chronic illness" as the number one health care problem in the United States. “Autoimmune diseases carry a huge burden for affected individuals and their families because of their devastating and chronic nature,” says Daniel Rotrosen, director of the division of allergy, immunology and transplantation at the National Institute of Allergy and Infectious Diseases. “They can require a lifetime of treatment, often with potent immunosuppressive medications that can have worrisome side effects.”
Chronic autoimmune disease is also one of the most expensive groups of conditions in the United States. However, there are many instances where it can be prevented. Maybe, just maybe, if we committed to investing in research into women’s health we may help with this catastrophic issue.
“To become chronically ill is not only to have a disease that you have to manage, but to have a new story about yourself, a story that many people refuse to hear-because it is deeply unsatisfying, full of fits and starts, anger, resentment, chasms of of unruly need.” - Meghan O’Rourke
How To Advocate For Yourself As A Woman With A Chronic Illness:
Though being a woman living with a chronic illness presents a heavier load to carry, you mustn't stop advocating for yourself. It is important to remind yourself that though doctors are experts in certain fields, YOU are the top expert in YOUR body.
Always pay close attention to your symptoms, particularly if they are new and affecting your quality of life. If you feel that a doctor or medical professional is unable to address your symptom or complaint, ask for a second opinion. You absolutely have the right to do that.
Here are some additional tips:
Make your moans be measurable. Meaning: chart your symptoms and be specific. Include descriptions of your symptoms, when they occurred, how severe they were, and how long they lasted.
Keep an account of your laboratory, imaging, and other diagnostic testing.
Come with questions to your doctor's appointment. If you run out of time, use your doctors online portal to pose any missed questions or follow-up questions.
Remember your value. Just because a doctor says something, doesn’t mean that it’s a fact. You deserve to be treated with respect, and if your doctor isn’t showing it, time to move on.
Educate yourself about gaslighters' behaviors: they project, they tell you other people are liars, they don’t take responsibility for mistakes, their actions don’t match their words, and they even throw in a nice word here or there to confuse you. By educating yourself, you can protect yourself.
Report any instances of abuse to The Federation of State Medical Boards (FSMB). They provide contact information for every state medical board in the U.S. and its territories.
In closing, let me share my personal testimony. Coping with a chronic illness for the last 30 plus years has been challenging. I have endured self-doubt, self-loathing, helplessness, powerlessness, anxiety, and fear being a woman with lupus. It has been difficult to say the least. But it is far more tolerable when I am open, honest, and share my feelings with others. Only through my vulnerability and transparency, have I come to find my people. My community.
If you are reading this, I bet with certainty that community includes you. So thank you.
I want to leave you with a poem by Dina Craik, which says this:
“Oh, the comfort
The inexpressible comfort
Of feeling safe with a person
Having neither to weigh thoughts
Nor measure words
But pouring them
All right out, just as they are
Chaff and grain together,
Certain that a faithful hand will
Take and sift them.
And with the breath of kindness
Blow the rest away.”
So precious women: find those that can keep you safe...the faithful hands of love that carry you with a breath of kindness...
and blow the rest away.
Written By:
Kelli (Casas) Roseta
*All resources provided by this blog are for informational purposes only, not to replace the advice of a medical professional. MTL encourages you to always contact your medical provider with any specific questions or concerns regarding your illness. All intellectual property and content on this site is owned by morethanlupus.com. This includes materials protected by copyright, trademark, or patent laws. Copyright, More Than Lupus 2022.
Sources:
Meghan O’Rourke, The Invisible Kingdom, 2022, p. 104-105, 106-107; 261 Riverhead Books
The New York Times, Sept 23, 2014, “Health Researchers WillGet $10.1 Million to Counter Gender Bias in Studies”
Barbara Ehrenreich and Deidre English, For Her Own Good; Two Centuries of the Experts’ Advice to Women (New York: Anchor Books, 2005).
American AutoImmune Related Diseases Association newsletter InFocus, 22. No. 1 (March 2014)
Sick and Tired of Feeling Sick and Tired, By: Paul J. Donoghue, Ph.D. and Mary E. Siegel, Ph.D., Norton Press, pg. 187 Copyright 2000
April 2022