Medical gaslighting is the devaluation, doubting, or downplaying of patients’ symptoms or concerns by medical staff – a problem that particularly affects marginalized groups and can have serious consequences: patients may receive the wrong treatment, avoid doctors, or lose confidence in their own physical well-being. Merle Bochmann, Thordis Schreiber, Nele Konradine Finger and Nico Taibner examine the gender dimension of this social problem.
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Although the concept of medical gaslighting has only been developed in the last five years, the term gaslighting dates back to the 1930s. It comes from the play of the same name, “Gas Light,” by Patrick Hamilton. In the play, a husband manipulates his wife by making her believe she is going crazy: he dims the gas lights in the house and denies that their brightness is changing. This psychological manipulation goes so far as to make his wife doubt her own senses. Her confidence in her own perception is deliberately undermined.
Today, it is not so much the manipulation of a single puppet master, but a systemic problem. If symptoms do not fit into predefined diagnostic categories or cannot be detected immediately with standardized methods, they are often not taken seriously – even though these methods have significant gaps in their effectiveness, as they are often developed only for certain bodies and population groups. Add to this stress, work pressure, and stigma, and doctors do not take what patients say seriously.
T.’s story
T. suffers from subhemophilia A. Hemophilia, better known to the public as hemophilia, refers to the absence or reduction of factor VIII, which is responsible for blood clotting. Among other symptoms, the disease causes people to bruise more easily and bleed significantly more. There are several subtypes of hemophilia. Subhemophilia A is a particularly severe form that was long thought to affect only men. Without prompt and appropriate medical treatment, severe bleeding from even relatively minor injuries can be fatal. Since her diagnosis, T. has experienced medical gaslighting and even life-threatening mistreatment. Many doctors are unaware that subhemophilia A can affect people of either sex. “The symptoms of the same disease can be different in men and women. Inadequate diagnosis leads to unequal treatment, because people do not receive adequate therapy,” says Prof. Dr. med. Ute Seeland.
When T. was hit by a car on her way home in 2021, she suffered a concussion and internal bleeding. She immediately called an ambulance. When the ambulance arrived, she gave the paramedic an emergency ID card with all the important information about her condition. It clearly stated that T. had subhemophilia A and needed to be treated accordingly. “Sometime between the time the paramedic took my medical card and the time I arrived at the emergency room, my medical record was changed to say that I have a Factor V coagulation disorder, which means that my blood is too thick” – the exact opposite of T.’s actual condition.
The result was a serious medical error. T. was given several blood-thinning medications for 24 hours before her mother realized the mistake had been made. This could have been fatal for T. She had to keep reminding the medical staff which medications she was allowed to take and which she was not. This power asymmetry, in which patients are not trusted to discuss treatment options as equals, also contributes to medical gaslighting.
The assumption that subhemophilia is a disease that can’t affect women meant that T.’s disease was almost never diagnosed. Again, her experience was characterized by medical gaslighting. When her mother was diagnosed with subhemophilia A, only T.’s brother was tested. T. herself was only tested at her mother’s insistence. At the time, the consensus was that the gene mutation was passed from mother to son and then from son to daughter, so my brother was tested for the coagulation disorder. The doctors didn’t want to test me at first, but after my mother insisted, I was tested as well.
Marginalized groups in clinical research
Dr. Christiane Groß, President of the German Association of Women Physicians, explains how the ‘female perspective’ has long been missing from medical research and teaching – and in some cases still is. The different perception of women’s diseases can be explained by the fact that, until a few decades ago, research focused exclusively on the male body. In addition, gender-specific medicine has only been included in medical training programs for the past 10 to 15 years. In the future, gender-specific medicine must be more firmly anchored in the study regulations. “Too little has been taught, which is why there are still doctors who have not yet internalized the topic,” says Groß.
Prof. Dr. med. Ute Seeland also emphasizes positive developments in medical education. “The male perspective has been dominant in medicine. Our work is slowly changing that.” At the cardiologists’ congress in Mannheim, the program is structured to ensure a more balanced gender distribution in the sessions. “We want different perspectives and different ideas,” says Seeland. One reason for the exclusion of women from clinical research is the serious consequences of the thalidomide scandal in the 1960s. Since then, the inclusion of minorities in medical studies has changed dramatically. Today, it is almost impossible to submit a dossier to regulatory authorities without having data on the effect of the substance being tested on the female body.
However, the gender balance in different areas of research is still not optimal. On average, 25-30% fewer women than men are recruited for heart failure trials. In addition, the problem of representing minority groups is not primarily one of inclusion, but rather of differential analysis and treatment. It is not only important for women to receive a specific evaluation of study results. Ideally, sex-segregated clinical trials provide insights into different side effects and dosage regimens depending on the physical characteristics of the subjects. These findings can lead to fair and safe prescribing of medications or other treatments tailored to the individual.
For several years, research funding organizations in the EU, Canada and the US have been encouraging scientists to collect gender-specific data. According to Prof. Dr. Oertelt-Prigione, the focus is now on demanding the often lacking transparency in data analysis with regard to gender differences. “There is still much to be done and many unanswered questions in research. But the increased attention is leading to specific requirements in research funding, which in turn is leading to increased production of gender-sensitive data. And that will ultimately benefit patients,” says Oertelt-Prigione.
Medical gaslighting and the queer community
When researching the term medical gaslighting, one inevitably comes across the examples of endometriosis and PCOS. This is understandable, as these are conditions that rarely affect men. Medical research is still heavily focused on the white, male, non-disabled ‘standard body,’ so knowledge about these conditions remains inadequate. The road to diagnosis is often long, and sufferers often find their pain dismissed as simple menstrual cramps or psychosomatic stress reactions.
Despite increased awareness in recent years, the situation for sufferers remains difficult. Christiane Groß explains how social awareness of conditions such as PCOS and endometriosis has changed in recent years. In general, we talk more about gender-specificity and the disadvantages women face, because their perspective has been missing in many places. Now that more women are reaching the top, it is getting a little easier. But it is still difficult because most top positions, both in politics and in health care, are still dominated by men.
However, when discussing endometriosis and PCOS, it is often overlooked that trans and non-binary people can also be affected. In addition, very antagonistic language is often used. Both conditions are referred to as ‘women’s diseases,’ and the term medical gaslighting is often used interchangeably with ‘women’s health.’ But Marianne Legato, the pioneer of gender medicine who wrote the first definition of the discipline, explicitly emphasizes that gender medicine is not women’s medicine. Rather, it is the study of gender differences to ensure more comprehensive medical care for all. Seeland notes in this regard: “Marginalized groups include women, older people, but also people of color or people with disabilities.” Members of the queer community are also among the groups that suffer from discrimination in medicine. To combat this discrimination, Samson Grzybek founded the organization Queermed. The idea is based on a project of the same name in Austria. Queermed is a portal where queer people can recommend doctors who are sensitive to discrimination.
The recommendation is based on a questionnaire. In addition to basic information such as the address of the practice and contact details of the treating person, the questionnaire also covers membership of groups such as trans, inter and non-binary people, gays, lesbians, but also, for example, people with autism or victims of sexualized violence. This is to ensure that as many dimensions of discrimination as possible are covered. Because, as Samson Grzybek says: “Even if doctors are queer-friendly, they can still be racist or have a bias against the disabled.” The fact that queer people experience discrimination when visiting the doctor was also confirmed by the German Federal Anti-Discrimination Agency in a study on risks and protection against discrimination in the healthcare sector, published in 2021. Lesbian and bisexual women report that their treatment worsens when they reveal their sexuality. According to a survey by the European Union Agency for Fundamental Rights, 26 percent of trans people who have used health services in the last 12 months say they have experienced discrimination. This makes Germany one of the countries with the highest rates in the EU.
Another problem is that doctors are often prejudiced or lack expertise in trans-specific issues. Grzybek emphasizes that older doctors in particular often hold discriminatory views that they learned during their training decades ago. This is one of the reasons why treatment is often refused by urologists or gynecologists, even if the patient’s own anatomy requires it. All of this leads to queer people being less likely to go to the doctor when in doubt, and important diagnoses may be made later.
Will medicine become more equitable in the future?
There is still a lot of work to be done. Stories like T.’s show the consequences for patients when their testimonies are not taken seriously by medical staff, and when medical professionals do not receive gender-sensitive training. This is one of the reasons why Christiane Groß and the German Medical Women’s Association are calling for equal representation in professional associations. In addition, politicians need to realize that research funding can only be granted if gender-sensitive research is guaranteed.
Samson Grzybek would like to see more support for patients who experience discrimination. Although there are reporting centers, many patients are not aware of their existence. In addition, some of these hotlines are housed within medical associations. This creates a conflict of interest, as the associations are supposed to be the point of contact for patients, but they also lobby for doctors. “There is still no neutral third party that could adequately support patients,” says Grzybek. Sabina Schwachenwalde, physician and author of the non-fiction book “Ungleich behandelt” (Unequally Treated), supports this demand: “What we really need are independent hotlines that specialize in discrimination in the health care system.” Despite the work that still lies ahead, gender awareness and gender sensitivity in medicine are on the right track, according to Christiane Groß. “An incredible amount has changed, especially in the last five to ten years. And sometimes I thought it was like a voice in the wilderness. But something has really changed. And that makes me optimistic.”