In her recent book, Invisible Women, Caroline Criado Perez exposes some of the astonishingly absurd ways that women have been left out in a world designed by and for cismen. One of the most startling revelations from the book is the many ways in which sexism is very literally killing women and anybody assigned female at birth.
While there is a lot to unpack in this issue, this article will just briefly touch on the gender gap in healthcare that Perez describes and then move on to some practical information and advice to help women and AFAB(assigned female at birth) people navigate a healthcare system that was not designed for them.
The Gender Gap in Medicine
Much of modern medical knowledge is built on research that was done only on cismen. When women are included, it’s rare that any potential sex differences are acknowledged. As far as the medical canon is concerned, there is no meaningful difference between male and female bodies. What’s true for cismen is true for women—except when it isn’t. This gender gap exists for two main reasons: the lack of available data and the lack of education.
It’s “Too Hard” to Study Women
Throughout history, females have been actively excluded from medical research. It’s not just that researchers are overlooking the need to study female health, they’re stubbornly refusing to do so for the sole reason that “it’s too hard“.
Female bodies have hormones that differ from cismen’s and fluctuate over the course of 28 days or so. Researchers worry that women with those pesky hormones will mess up their neat little medical studies so, they just leave them out. Then, they confidently declare that their findings based on an all-male participant group probably apply to everybody else, too.
This trend of keeping AFAB people out of medical studies persists despite mounting evidence that we experience different symptoms and respond to different treatments for a number of common illnesses. It also persists despite mounting evidence that people who menstruate might have better outcomes if medications and therapies were adjusted throughout their (pesky, confusing) menstrual cycle.
In her book, Perez points out, “So far, menstrual-cycle impacts have been found for antipsychotics, antihistamines, and antibiotic treatments as well as heart medication. Some antidepressants have been found to affect women differently at different times in their cycles, meaning that dosage may be too high at some points and too low at others.”
If menstrual cycles affect a patient’s outcome and response to certain drugs and if roughly half the population has menstrual cycles, might it not be worth doing the extra work of factoring it into medical studies?
Medical Schools Act like Women Don’t Exist
If you made assumptions based on medical school curriculums, you would think that women are just cismen with vaginas where their penises should be. Medical school curriculum across Europe, the United States, and Canada almost universally lacks any discussion of the sex differences that exist outside of the reproductive system.
When gender-based medical courses are offered, they are almost never mandatory and even less likely to include any meaningful discussion of trans-specific health issues like hormone therapy or gender-affirming surgery.
In fact, studies found that “sex-specific information was absent even in sections on topics where sex differences have long been established (such as depression and the effects of alcohol on the body), and results from clinical trials were presented as valid for cismen and women even when women were excluded from the study” (Perez, Invisible Women).
This lack of sex-specific education persists despite the fact that “researchers have found sex differences in every tissue and organ system in the human body, as well as in the ‘prevalence, course, and severity’ of the majority of common human diseases” (Perez, Invisible Women).
The result is a system in which most doctors have no idea that AFAB people might express different symptoms for the same diseases or respond differently to medication than cismen do. The consequences are that women are more likely to be misdiagnosed, mistreated, and mistakenly discharged to die a preventable death at home.
How to Avoid Death by Yentl Syndrome
In the medical community, the phenomenon of misdiagnosing and mistreating women has been termed Yentl syndrome. In certain cases, like heart attacks and strokes, it can be fatal. Even when it’s not fatal, it can lead to suffering and an overall lower quality of life.
The first step to ensuring that you get the proper diagnosis and treatment is learning to recognize the symptoms in yourself that your doctors might miss. In this section, we’ll look at some of the conditions that are most often misdiagnosed in women and how your symptoms might differ from cismen:
The popular idea of a heart attack victim clutching his chest and going numb in one side is, unfortunately, rarely what a heart attack looks like in women. Because women rarely experience chest pain, you are seven times more likely to be discharged from the hospital in the middle of a heart attack because “there’s nothing wrong with you.”
Instead of chest pain and numbness, women having a heart attack are more likely to experience the following symptoms:
- Shortness of breath
- Stomach Pain
- Pain the neck, jaw, shoulders, or upper back
- Dizziness or lightheadedness
- Pain in one or both arms
Due to a lack of research in the area, it’s unclear how gender-affirming hormone therapy might influence the symptoms you exhibit. Fortunately, what research does exist suggests trans men taking testosterone don’t have any increased risk of heart attacks. Just be alert to all possible symptoms.
Women often present with different symptoms of stroke than cismen. Note that even the linked article labels women’s stroke symptoms as different from the “common symptoms” even though women are not only quite common but also more likely to have a stroke. Some of those “uncommon” female-specific symptoms include:
- Shortness of breath or difficulty breathing
- General weakness
- Confusion or disorientation
- Sudden behavioral changes
- Nausea or vomiting
As with heart problems, little research has been done on trans men taking testosterone and how this might effect stroke symptoms and outcomes. From the limited data that does exist, there doesn’t seem to be an increased risk of stroke so, again, just be alert to all possible symptoms.
Misdiagnosis or even delayed diagnosis of strokes in women is a serious issue because most stroke treatments are only effective if they’re done within the first 3-4.5 hours of symptoms appearing. Women who have had a stroke also have a harder time making a full recovery than cismen so it’s imperative to get diagnosed and treated as early as possible.
Anyone assigned female at birth with HIV is less likely to show many of the typical signs of the infection that cismen show. While you might not get “flu like symptoms” or other symptoms that could indicate HIV infection, some early warning signs women do get include sudden, unexplained changes in their menstrual cycle and an increase in yeast infections.
If you’re taking testosterone, you’re likely already experiencing changes to your menstrual cycle so it’s best to just get tested regularly, even if you aren’t presenting any symptoms.
Pain isn’t misdiagnosed but it is all too often dismissed because the assumption is that women who complain of pain are just being dramatic. This dismissiveness leads to women and AFAB people suffering from undiagnosed problems like IBS and other painful, chronic conditions.
For example, it takes patients 8-10 years, on average, to receive an endometriosis diagnosis. This is significant because, left untreated, endometriosis will worsen over time and increase your risk of becoming infertile or developing ovarian cancer. Not to mention, it causes unbelievably painful periods every single month while you’re waiting for your doctor to finally believe you.
Unfounded gender stereotypes about pain also mean that female patients are less likely to get the pain medication they need. When you complain of migraines or abdominal pain, you’re more likely to get a sedative or even an antidepressant instead of actual painkillers.
This reluctance to give women pain medication persists even for patients who have just had surgery. In a study of male and female patients who received the exact same coronary bypass surgery, researchers found that male patients were more likely than female patients to receive post-op pain medication.
How to Get the Treatment You Actually Need
Beyond misdiagnosis, the lack of sex-based data also leads to inappropriate, ineffective, or even harmful treatments being given to patients without regard to the fact that their bodies might have different requirements. In this section, we’ll discuss some of the treatments that you should approach with heavy skepticism and which treatments research has shown to be more effective for female patients:
AFAB people who have had a heart attack should focus on lifestyle changes like diet and exercise as the most powerful recovery and prevention method. Beyond those changes, you should also ask about statins. Cismen and women both benefit from taking this cholesterol-lowering drug after a heart attack but cismen are more likely than women to be prescribed statins.
While you should ask about statins, be skeptical of recommendations to take daily low-dose aspirin. This treatment is effective in cismen, but research has found no benefit in women. No studies on potential benefits in trans patients have been done. Moreover, regular aspirin use increases women’s risk of dangerous bleeding events.
People with diabetes who also menstruate should talk to their doctors about creating an insulin schedule and diet tailored to your menstrual cycle because your dietary requirements and insulin requirements will change depending on the stage of your cycle.
Birth control, pregnancy, and menopause can all also impact your blood sugar levels so make sure you’re regularly consulting with your doctor to tailor your diabetes management plan to your body throughout different phases of your life.
Addiction isn’t misdiagnosed in AFAB people, but it can be hard to find effective treatment because the causes of substance abuse in women and LGBTQ people are often different than the causes in cismen. Moreover, the treatments that work best for straight, cismen don’t work as well for everybody else.
The traditional treatment for alcoholism and substance abuse involves a combination of detox and a rigid, confrontational therapeutic approach—that “tough love” that you see in media portrayals of addiction recovery. This works well for cismen who are more likely to have started drinking or using drugs out of either peer pressure or a desire to party and have fun.
It works less well for women and LGBTQ addicts, who are more likely than cismen to have developed the addiction as a coping mechanism for a preexisting mental illness or in response to trauma. For addiction that is linked to mental illness or trauma, it’s often more effective to treat that underlying issue than it is to focus simply on detoxing and teaching healthier habits.
Regardless of cause, women and LGBTQ patients typically respond better to more compassionate and nurturing therapeutic approaches rather than the standard confrontational approach.
6 Tips to Advocate for Yourself at the Doctor’s Office
Until things change at the policy level, it’s up to you to make sure your symptoms are being believed and that you’re getting treatments that actually work for you. Here are a few ways you can improve the care you receive:
1. Demand Female Doctors
Research shows that, in many cases, your outcomes will be better if you’re treated by a female physician. They’re more likely to make evidence-based decisions rather than relying on gender stereotypes and they tend to communicate better with patients about diagnosis and treatment. One study showed that female heart attack patients who were treated by a female physician were more likely to survive the heart attack than those treated by male physicians.
2. Get Second Opinions
If you’re experiencing symptoms that your doctor is dismissing or receiving prescriptions for a medication you’re not sure you should be taking, get a second opinion. This is especially important if you think you might have one of the conditions discussed earlier in this article.
If you suspect you have a condition that is often underdiagnosed in AFAB patients, seek out a doctor who specializes in that condition for a second opinion.
3. Ask a Ton of Questions
If your doctor prescribes a medication you don’t know much about or says something you don’t understand, ask questions about it. If they seem irritated by your questions, ignore that irritation and keep asking! You have every right to be concerned and curious about your own health.
Some good questions to ask include:
- What is my diagnosis and what are you basing that on?
- What else could it be? On what basis did you rule out those other possibilities?
- What treatment are you recommending? Why?
- What other treatment options are available?
- What lifestyle changes should I make to manage my symptoms or improve my outcome?
- Will this drug interact with [insert any prescription or over the counter medication, supplements, recreational substances, etc. that you take]?
- What are the potential adverse reactions of this drug and how can I prevent them?
- I didn’t understand what you said. Can you explain that again?
For best results, write down a list of questions in advance so you can be sure that you understand everything you need to know.
4. Do Your Own Research
There’s a stigma about patients who “read too much WebMD” before coming into the doctor’s office but there’s absolutely nothing wrong with doing your own research about your symptoms. This is how you figure out what questions to ask and what diagnostic tests might be most appropriate to request.
Again, if your doctor seems annoyed, power through it. It’s better to have an annoyed doctor than an undiagnosed heart attack.
5. Bring a Friend or Family Member
Sometimes, it’s hard to stand up for ourselves. If you’re nervous about talking to your doctor, bring someone you trust with you. Just the presence of a friendly face can encourage you to speak up but even if you’re still feeling nervous, your friend or family member can speak up on your behalf.
6. Don’t Be Afraid to Change Care Providers
If your primary physician is impatient, unresponsive, or dismissive of your concerns, you have every right to demand better care. Find a doctor who listens to you and, whenever possible, a doctor who’s aware of the sex differences in symptoms and treatment outcomes of various conditions. If you’re trans, see if there any doctors in your area who have taken the time to actually learn about trans health issues.
If you’re uninsured, underinsured, or living in a rural area with limited access to healthcare, this may not be a realistic option. In your case, just do your best to stand your ground and annoy your doctor into giving you the care you deserve. Researching your potential diagnoses and treatments and bringing a friend are your best weapons against a dismissive doctor.
7. File a Complaint
If your doctor misdiagnosed you, unreasonably delayed or refused medication (such as pain medication after surgery) or otherwise mistreated you, you have the right to file a complaint.
First, file a complaint with the hospital administration and state medical board. While this won’t guarantee any disciplinary action, if this individual has enough complaints filed against them, the chances that those disciplinary actions will be taken increase.
Next, you can file a civil rights complaint with the Department of Health and Human Services (HHS). If the HHS decides your claim has merit, they will conduct an investigation that could lead to corrective actions.
As of this publishing, HHS does protect against discrimination on the basis of sex. However, thanks to Trump-era policy changes, discrimination on the basis of gender identity or sexuality in healthcare is currently legal. If you have been denied treatment or otherwise discriminated against on the basis of your gender identity, consider reaching out to your local ACLU branch to request legal assistance.