How Ageism and Ableism Intersect with Gender Bias in Medicine

Abstract:

Women disproportionately experience medical gaslighting, especially older women, women with disabilities, and women of color. This article explores the challenges older women, particularly those with disabilities, encounter in obtaining respectful healthcare. It focuses on medical gaslighting, or the dismissal of these elders’ medical issues as imaginary or resulting from mental health issues. It also covers denial of care, minimizing or ignoring physical signs of illness, and paternalization, as well as the potential of the disability justice movement to improve outcomes.

Key Words:

ableism, ageism, disability justice, sexism, medical gaslighting, racism, Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome

Medical Gaslighting: A Personal Journey

Living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has been a battle with intermittent relief (see CDC, 2021, to learn more about ME/CFS; https://www.cdc.gov/me-cfs/index.html). It affects my entire body and takes up space in my everyday existence. ME/CFS is recognized as a neurological disease by the World Health Organization but gets very little, if any, respect in society and medical circles.

As a 56-year-old woman with a background in public policy and social services (co-author Terri Wilder), my journey with ME/CFS has intertwined with systemic challenges that have affected me professionally and personally. My struggle with ME/CFS has been a long one, spanning decades before receiving a formal diagnosis. Throughout this time, the symptoms and their impact on my daily life were ever present, yet unexplained. Unrefreshing sleep, cognitive dysfunction, pain, sensitivity to light and sound, disabling fatigue, poor temperature regulation, and chemical sensitivities were all part of the laundry list of symptoms that disrupted my life. Other common occurrences: shame, misunderstanding, and disbelief.

But in March 2016, my life changed when I received the diagnosis validating that what I had been experiencing was real. I was one of the lucky ones. I was diagnosed by an ME/CFS clinical expert. Not only did this diagnosis help me understand what was going on with my body, it also gave me the opportunity to try potential treatments and connect with #MEAction (https://www.meaction.net/), an international organization that fights for recognition, education, and research so that people with ME/CFS will have support and access to compassionate and effective care. Through #MEAction I have met hundreds, if not thousands, of people across the globe with the same disease.

During my first year of diagnosis, I was terrified. I told only a few people. I naively believed that having a job, insurance, stable housing, and identifying as a white person would provide some level of protection against the challenges of living with ME/CFS. However, I soon realized that my privileges did not exempt me from the disbelief and dismissive attitudes I encountered in society that would ultimately prevent me from ever finding an approved treatment to get me back to the life I wanted, free from symptoms.

While my privileges granted me access to certain medical resources and opportunities, they did not shield me from the impact of medical gaslighting and the subsequent struggles I faced when seeking understanding and comprehensive care for my disease. The assumption that privileges, like insurance and socioeconomic stability, would automatically result in better treatment and validation proved to be inconsistent.

Medical gaslighting, a phenomenon in which a medical provider dismisses or downplays a person’s symptoms, or attributes them to something else, such as a psychiatric illness, became a disheartening reality during my encounters with healthcare professionals, including one dismissive cardiologist. While more likely to happen to people who identify as women, gaslighting is an experience shared by many people of color, older women, and women with disabilities.

This experience shed light on the systemic biases and discriminatory practices that persist in healthcare and in our society at large. It became evident that the disbelief and medical gaslighting faced by individuals with ME/CFS were not solely a result of individual circumstances but deeply rooted in broader societal structures that perpetuate ableism, sexism, racism, and ageism, and marginalize those who have chronic diseases and disabilities.

I vividly remember my cardiology appointment. I proactively scheduled it due to concerns about a family history of heart issues and my understanding of my disease's inflammatory nature, which could potentially put me at risk for cardiac issues. All went well at the beginning of my appointment. It was when I shared my ME/CFS diagnosis that the tone and behavior of the cardiologist shifted, and she proceeded to make dismissive remarks, implying that ME/CFS was not a real disease.

Her lack of understanding about the disease was evident when she told me that my problem was lack of exercise, without even considering the debilitating consequences that could occur from even a small amount of exertion for someone with ME/CFS (CDC, 2021). When it was obvious that there was no point in staying any longer, I abruptly ended the appointment. I called the next day to complain about my experience and referred the practice manager to a free ME/CFS medical-education course for the clinic. The response? She asked if I was trying to get the physician fired.

The experience of medical gaslighting highlighted for me the urgent need in healthcare systems for awareness, empathy, and education about disabilities. It exposed the biases and disbelief that individuals with ME/CFS and other disabilities often face, which hinder their access to appropriate care and perpetuate feelings of invalidation, neglect, and erasure.

I made an appointment with another cardiologist who listened to me without judgement, did a thorough exam, and set up a battery of tests. But what if I had not had the resources to set up another appointment and remained defeated by the experience I had just encountered?

The impact of ME/CFS on a person’s quality of life and the need to be listened to about that lived experience cannot be overstated. The fluctuating nature of the disease, along with its wide range of symptoms, significantly disrupts a person’s quality of life, relationships, and career aspirations. This is why believing people and doing everything possible to provide the most compassionate, comprehensive care is important. Medical gaslighting is harmful. It is hurtful. It can even be deadly.

The public’s disbelief surrounding ME/CFS poses additional challenges. The often-hidden nature (Űstűnkaya & Machin, 2021) of the disease, which can lack visible signs of disability (Paul, 2020); false narratives; and stereotypes about who gets the disease lead to invalidation and skepticism. Family and friends may struggle to recognize or understand the complexities of the disease. And when healthcare professionals fail to recognize the disease as valid, it can result in misdiagnosis or a failure to offer appropriate care and referrals. Furthermore, the lack of specific diagnostic tests for ME/CFS, along with the paucity of ME/CFS experts available in the United States (Dimmock et al., 2018), adds to the difficulty of receiving a timely and accurate diagnosis.

Of course, mine is just one story among thousands. In the community of people living with ME/CFS, medical gaslighting is a regular occurrence. It is a frequent topic of conversation in support groups, closed Facebook groups, and conferences. These conversations are always predictable yet bathed in frustration. Sadly, medical gaslighting is often considered a rite of passage in our community and it is felt that a person has not fully lived with the disease until they have experienced it.

Medical Gaslighting

History

Co-author Wilder’s arduous journey to gain respect for her symptoms, a diagnosis, and appropriate care shows the toll taken by medical providers who routinely dismiss women’s symptoms as resulting from “stress,” depression, or a belief that it is “just all in her head.” This is a problem most women face at some point, but it is particularly common for older women and women with disabilities, whose symptoms are often attributed to natural life changes or attention seeking, and in other marginalized communities for different reasons, such as assumptions that Black women are drug-seeking (Spencer & Grace, 2016).

Medical gaslighting has a long history. For about as long as medicine has been practiced, women’s medical complaints that were poorly understood were dismissed as “hysteria” (King, 1998). By the early 20th century, hysteria was used to explain any symptoms women described that were not easily diagnosed. Still today, women suffering from illnesses that mainly or only affect women are more likely than not to be told that their physical symptoms are the result of stress, family issues, sexual dysfunction, or depression, and sent home with a prescription for an antidepressant, or no treatment at all. For older women, this is true even for symptoms of illness more common among older people of all genders, such as cancer and cardiac disease (Dusenbery, 2018).

Prevalence

Medical gaslighting is not a rare problem or one confined to a few, poorly understood diseases. A recent survey of women revealed that a staggering 72% of respondents had experienced it (Castleberry, 2022). Their experiences included being ignored and dismissed, stereotyped, blamed, and, most often, told their physical symptoms were caused by psychological problems. The effects of ageism and ableism are clear when we note that older women and those with disabilities are more likely to have their symptoms dismissed or stereotyped (Jerome, 2022).

Women have difficulty obtaining treatment even for diseases that are major causes of death in the United States. In one survey, 44% of women with cardiac disease reported that their healthcare provider downplayed their symptoms or attributed them to psychological causes (Dusenbery, 2017). A study of physicians in which they were presented with hypothetical patients reporting the same risk factors and symptoms of heart disease, differentiated only by gender, found that only 15% of the doctors diagnosed coronary disease in the women, compared with 56% in the men (Chiaramonte & Friend, 2006). There is a similar disparity in the diagnosis of Chronic Obstructive Pulmonary Disease (COPD), the fourth most common cause of death in the United States, among women and men. Again, presented with hypothetical patients with identical clear symptoms of COPD, physicians diagnosed it in 65% of the men and only 49% of the women.

For diseases that are difficult to diagnose, have wide-ranging symptoms, and depend upon patients’ reports of their experience rather than objective tests, the ability for women to obtain appropriate care is much more difficult. Autoimmune diseases, such as lupus, multiple sclerosis, and rheumatoid arthritis, and diseases that are poorly understood, including ME/CFS and chronic Lyme, are commonly ascribed to psychological disorders or personal life issues for women (Moyer, 2022). One could say that psychologizing women’s physical symptoms is almost a default reaction.

Consequences

The results of the failure to accurately diagnose women’s illness are dire. Women wait longer for treatment of serious disease, including heart disease and cancer, are more often sent home from emergency rooms while having a heart attack, and particularly for Black women, take longer to receive pain medication while suffering severe pain (Hoffman et al., 2016).

One result is that men are about twice as likely to be diagnosed, treated, and referred to a specialist when visiting hospital rooms while experiencing cardiac arrest (Chiaramonte & Friend, 2006). While more difficult to quantify, it is well known that the best outcome for many diseases, such as cancer, stroke, and autoimmune disease, depends upon rapid treatment. According to The American Autoimmune Association, on average it takes four years and four medical providers to obtain a diagnosis (Autoimmune Association, 2023). Sadly, many women are only able to obtain care when significant damage has been done.

For many diseases that are poorly understood, women may never find adequate care. It is estimated that 31% of women who experience gaslighting ultimately stop seeking treatment (Castleberry, 2022).

Fundamentally, ignoring, downplaying, and dismissing women’s medical symptoms is dehumanizing. The essential denial of the individual’s reality can cause self-doubt, which can lead to depression, anxiety, and stress, the very conditions the medical provider tried to palm off on the person initially (Jerome, 2022). It is worth remembering that the term “gaslighting” originated in a stage play about a man’s attempts to have his wife judged insane.

Structural Basis

At this point we should note that gaslighting of older women does not occur because men do not listen to women. In fact, as Wilder’s experience demonstrates, gaslighting is not perpetrated only by male practitioners. Repeated studies have shown that men and women are equally likely to miss obvious medical diagnoses in women and to trivialize or psychologize their symptoms (Dusenbery, 2018).

Medical gaslighting of older women has structural causes. The characterization of women as unreliable and untrustworthy is essential to maintaining the historical male dominance of inheritance, control of family, and power in society. But in the medical and disability context, there are specific structures in the way medicine has developed and in the relationship between the medical provider and patient that lead to the common dismissal of women’s experiences.

Medicine has historically been, as Maya Dusenbery puts it, “by men, for men.” Until the early 1990s, there was no requirement that women be included in medical studies or trials, and generally they were not, even for diseases that primarily affect women, such as breast cancer (Dusenbery, 2018; Mazure & Jones, 2015).

Since 1977, the Federal Drug Administration prohibited women of “childbearing potential” from participating in medical studies, which resulted in many researchers excluding all women (Merton, 1993). Other researchers argued that women’s hormonal profile could alter clinical trial outcomes, without considering that, if true, this would be critical information to have when treating women.

The National Institutes of Health mandated in the early 1990s the inclusion of women in studies it funds. However, research indicates that women remain grossly under-represented, and that the situation is not improving (Merton, 1993). Still today, almost no studies include people older than age 65, leading to a dearth of understanding of the health of older women (Dusenbery, 2018).

The exclusion of women from research has resulted in a lack of understanding of many diseases from the female perspective. During the early days of the HIV/AIDS epidemic, women were largely excluded or underrepresented in clinical trials and research studies. This lack of gender-specific data and insights in HIV research has led to suboptimal treatment plans and prevention strategies for women, hindering effective efforts to combat HIV. Similarly, a comparable issue emerged with heart disease, where the recognition of different symptoms in women did not occur until the early 2000s (Keteepe-Arachi & Sharma, 2017). Unfortunately, even today, many emergency personnel dismiss women’s less definitive symptoms of cardiac arrest, contributing to a higher female mortality rate (Heart Matters, n.d.).

Additionally, conditions that primarily affect men are more likely to attract research funding than those that affect women. For example, five times more funding is devoted to erectile dysfunction, which affects 19% of men, than to dysmenorrhea, from which 90% of women suffer to some extent (Jerome, 2022).

Another structural framework that disadvantages women in medical settings is our understanding of the “sick role,” or how sick people should behave (Parsons, 1951). For society to recognize that someone is ill and allowed to avoid the economic and productive burdens of social life, they must conform to the “sick role,” by withdrawing from public and productive activity and following all advice in pursuit of a cure. What that line of thinking does not allow is feeling okay some days and not others, as with ME/CFS, chronic Lyme disease, or Long COVID, or failing to pursue prescribed but unhelpful therapies. As many diseases that primarily affect women do not conform to this role, they are not considered “real” diseases.

The structures of ageism also contribute to failures to respond respectfully and effectively to women’s reports of illness. The most obvious example is the emphasis on youthful appearance, often focusing on weight. While weight bias affects larger people of all genders and ages, patient surveys reveal that older women are commonly told that their chronic pain, fatigue, and other physical symptoms would resolve if they lost weight. Conversely, older women who report unexplained weight loss are often congratulated, rather than queried about other symptoms and possible causes (Dusenbery, 2018)

Other structural barriers to obtaining comprehensive care for illnesses that disproportionately affect older women are cost, financial challenges, and demands on their time. Women make up most of the uninsured adults (Dusenbery, 2018). Even with insurance, poorer women often must rely upon providers with larger patient loads and less time allotted to each patient, which encourages a tendency to find an easy explanation requiring little of the medical provider’s attention. Women are less likely to own a car and thus have more difficulty getting to medical appointments and are more likely to be working later in life in jobs without much paid time off and to be a caretaker for relatives (Kaiser Family Foundation, 2022).

These structural issues will not be resolved by educating healthcare providers to respond more empathetically to women’s reports. What is needed is more aggressive and concerted funding for research into diseases affecting primarily women, based upon studies of women. This will not happen without more attention from regulatory and funding agencies and legislation mandating it.

Response: Disability Justice

Addressing medical gaslighting, along with ageism and gender bias in medicine, requires a comprehensive approach that combines personal storytelling with broader policy advocacy efforts. Disability Justice, founded by Black and Brown Queer people, provides the transformative framework needed to challenge and dismantle the intersecting oppressions faced by individuals with disabilities (Sins Invalid, 2020). It recognizes that disability cannot be separated from other social identities such as race, gender, class, age, and sexuality. By centering the experiences and voices of disabled individuals, Disability Justice challenges the power dynamics and oppressive systems that perpetuate medical gaslighting and disbelief.

Within Disability Justice, intersectionality plays a crucial role (Crenshaw, 2016). It acknowledges that disability intersects with other forms of oppression, and the experiences of disabled individuals are shaped by multiple identities. By recognizing the unique challenges faced by disabled individuals from marginalized communities, Disability Justice highlights the need for inclusive and equitable healthcare practices.

At the core of Disability Justice is the principle of collective liberation. Collective liberation poses the question, “How do we move together?” This principle emphasizes the importance of unity and solidarity across diverse identities, including abilities, race, gender, class, age, and sexual orientation, leaving no body or mind behind in the pursuit of liberation (People & Planet, n.d.). By embracing collective liberation, Disability Justice seeks to create a society where all individuals, regardless of their abilities, can thrive and contribute.

It is imperative to acknowledge that the future is inherently disabled, as disability is an intrinsic aspect of the human condition. Embracing a Disability Justice framework while responding to medical gaslighting not only amplifies the voices and experiences of individuals with disabilities but also underlines the urgency of dismantling ableist structures within society. Just as Disability Justice advocates for collective liberation, it reminds us that our struggles for equity are interconnected and interdependent. By recognizing the intersectionality of discrimination, we can build solidarity among all marginalized communities and work together to challenge medical gaslighting and dismantle oppressive systems.

Through these collective efforts, we pave the way for a truly inclusive and equitable society where every individual can fully participate and thrive and receive the healthcare services they need and deserve.

Rani Kronick is an independent scholar with a long history in the disability movement, based in upstate New York. Terri L. Wilder, MSW, is the HIV/Aging Policy Advocate at SAGE and the Chair of #MEAction Minnesota, based in Minneapolis.

Photo credit: Shutterstock/AtlasStudio

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