NOVEMBER 2, 2021 BY CANCER ROSE
BOOK “IM-PATIENTE”, a feminist exploration of breast cancer
Publisher First Editions
By Mounia El Kotni and Maëlle Sigonneau
Mounia El Kotni is an anthropologist specializing, among other subjects, in health issues.
Maëlle Sigonneau was an editor. She disappeared in 2019 due to metastatic breast cancer. We hear her speaking in a podcast of Impatientes for Nouvelles Ecoutes in 2019 (a series of podcasts was then produced around the theme of breast cancer to tackle the injunctions addressed to women more globally by the medical profession and society).
The book is a continuation of the podcast, and it addresses the social and feminist impact of the disease through the eyes and experience of Maëlle. It talks about medical mistreatment and administrative violence. It highlights the sexist injunctions aimed at not harming society and masking this disease, disguised in pink and glamorized in October Rose campaigns.
This powerful book goes beyond the sole theme of cancer to resonate with all those who suffer from chronic illness.
Injunctions to femininity
"Are you having chemotherapy? Then the most important thing is to moisturize your skin, ok ?"
Is this really a caring concern of the pharmacist? Or is it the reflection of a society afraid of disease that the image of a sick woman sends back to it? The patient just wants to live, survive, and grow old...like the rest of us.
"It's important not to let go!" Are men told not to let themselves go after an illness?
What if we told women that there are certainly available moisturizers, wigs, breast prostheses, but only if they want them. And they have the right to be tired, makeup-free, bald, and refuse breast reconstruction.
Injunctions to procreate
A visit to a fertility clinic is one of the first steps in the process for young women. Although oocyte preservation is not compulsory, the book explains how years of preparing women to be mothers push them to save their oocytes "just in case," even if they do not plan to have children.
This oocyte conservation project is offered within days of the announcement. The book underlines to what extent specific accesses in health (here fertility preservation) are made fast, fluid, and obvious when society considers it legitimate. At the same time, some categories of people (homosexual couples) encounter many obstacles and exclusions in their medically assisted procreation process.
Injunction to breast reconstruction
The deletion of the sick body also involves breast reconstruction. The prosthesis is often a way for women to return to "normal" to go back to the condition of "before cancer." This wish is encouraged by society; the presence of breasts in pairs seems indispensable.
However, 70% of patients abandon breast reconstruction for various reasons, including a lack of surgical options or budgetary constraints.
Injunction to screening, injunctions by Pink October
The book also talks about how women are solicited during the Pink October campaigns without giving them easier access to more measured and objective scientific information.
When a woman questions the relevance of this screening in societal, media, or medical messages, she is constantly criticized, either for being imprudent or inconsequential. On the other hand, she is called stupid or "indoctrinated" and uncritical when she strictly follows official recommendations.
Women's interests are frequently put second; for the manufacturers of screening tests and mammography machines, medicine is just a market, and the people who persuade politicians to make public health decisions are those who have something to sell and a stake in the pursuit of those public health policies.
Finally, women become permanent subjects of medical surveillance and disease and cancer detection, making them "walking" risk factors...
They do not benefit sufficiently from decision-making tools with balanced information, which our collective Cancer Rose continues to denounce.
Pink October has become a market; there is no real national campaign of information. There, too, the image of a naked woman is used to promote a product, even if it is a medical examination.
We always hear the same stories about women who have beaten cancer, but do we hear about women who have serious cancers from the start, metastatic cancers for which medicine is still rather helpless?
Behind the pink mask hides concealment of less pleasant and less "glamorous" facts.
Pink October is a marketing tool that allows products to be sold under the pink label, but the amount of money collected and donated to research and its use is rather obscure.
Injunction to beauty
Are the "beauty workshops" offered to women after their treatments of real benefit to patients, or is it a lucrative business? Often, the workshops are free, but as the saying goes, "when it's free, you're the product to sell."
The products are, most of the time, completely conventional. It is not because the product is offered that it is necessarily without ulterior motive. It is necessary to be cautious of what is proposed; the products are not necessarily "organic" or "natural," as one might expect.
The cost of these products adds up to a loss of income for many patients. Half of the people have an out-of-pocket expense; some dental care for dental conditions secondary to treatment are not covered.
30% of women over 50 years old do not return to work within two years, and 20% of those who return to work only return part-time.
Earnings drop
Within two years of being diagnosed, three out of every ten women lose or quit their job. Women who become ill are frequently concerned about being perceived as underperforming, and their self-esteem suffers as a result.
Despite financial support, 60% of women experience a drop in income at the end of a labyrinth of procedures.
Information about administrative procedures is also difficult to obtain, and there are numerous bureaucratic obstacles. This also causes a lot of stress for the patients.
Injunction to perform, including in the context of sexuality
Women with breast cancer must continue to fulfill their societal roles. They are not always supported at home or work. The cancer survivor is portrayed as a fighter, a warrior.
This puts a tremendous amount of pressure on women because this is frequently how she is portrayed: as a woman who has overcome the disease, returns to work, grows out of it, and resumes a normal love life.
These are significant injunctions that deprive women of being simply individuals, sick human beings who need the care of others.
After illness, a woman is six times more likely to be abandoned by her partner.
After two years, 21% of ill women had been abandoned by their partners, while only 3% of ill men had been separated.
Injunction to sexuality
To recover its "life as a woman "is a way of saying "to regain her sexuality. "And this injunction, the women are the ones who receive it.
"Do not let yourself go and remain desirable." The book asks the question, "...who are the real beneficiaries of these injunctions: the women or their (supposed) partner? Does "maintain sexuality" despite cancer suit women, or does it rather suit society?"
Making women feel guilty
The current discourse on cancer prevention is based on making women feel guilty, blaming their lifestyle. The fight against cancer is oriented, on the one hand, towards an injunction addressed to women to make "the right choices" and to live healthily, and on the other hand, towards a technological approach in early detection by mammography.
However, a third option is being overlooked: the implementation of ambitious environmental health policies.
In 2017, cancers represented the second largest health care expense for Social Security. These changes and progression cannot be explained solely by aging or demographic change. Addressing real environmental problems is critical. However, prevention through environmental cleanup is costly, whereas so-called prevention, based on early cancer detection, is highly profitable for the imaging and pharmaceutical industries.
The charities
Maëlle denounces the sometimes clumsy and misplaced charity of organizations.
She feels that people in these organizations essentially solve their problems by making believe that they are helping. Maëlle denounces this intrusive and infantilizing help that she experienced, with the distribution of daffodils, for example, in the hospital's vicinity, at the end of her chemotherapy treatment...
Maëlle explains a need for adapted social care; the emergency is not the cancer that everyone talks about, with a good prognosis, curable. The priority for research should be on these serious, immediately metastatic cancers.
Feminism
For Maëlle, the fight is also a feminist one.
Men had succeeded in attracting the attention of public officials in the fight against AIDS. Metastatic breast cancer has less visibility in Maëlle's opinion because it affects women, who have less space to express themselves.
To break free from compassionate behaviors and the glamorization of cancer, we would need to boycott Pink October, replacing pink messages with large posters on endocrine disruptors; we could imagine a month where conferences on advanced and metastatic breast cancer would be organized, and where we would raise awareness about the carcinogenic effects of pesticides, for example...
Instead of covering up this disease with pink, we must demand ambitious public policies, mobilize research (more on the risks of dying from cancer than on the risks of knowing a cancer in one's life, on the genetic determinants and the association with obesity and with certain atypical breast hyperplasias, Editor's note), improve the difficult daily life of the sick women.
The theme of this courageous book goes beyond metastatic breast cancer. Chronic diseases are a silent epidemic that should push us all to get involved in the real issues of public health.