The Hidden Honour Girls

A teenage girl comes running along the quiet street with ordinary suburban villas on both sides. She’s not wearing any shoes and screams for help. A neighbour lets her in and calls the police. The girl says that she has been locked up and brutally abused during the night because her father had discovered that she has a boyfriend. 

“[My father] asked me if I was afraid. Then he punched me in the head and said that he would kill me with the kitchen knife,” she says. 

Death threats, chokeholds, and torture. A review of hundreds of court rulings reveals that most of the children who have endured honour-related oppression have been exposed to physical violence on a large scale. Among the perpetrators are fathers, mothers, siblings and cousins. 

No one knows exactly how many children are subjected to honour-related oppression and violence in Sweden.  

SVT went through over 400 court orders concerning taking into care of minors due to violence in the home. Fifteen per cent can be tied to the term honour-related physical punishments and murders.  

For several months, SVT followed several girls who were taken into care by social services in order to investigate honour-based oppression and violence in Sweden. The girls we followed describe feeling completely alone, and say that they’ve become stuck in a constant loop of despair. 

It is often the father who beats the child 

The court rulings investigated by SVT concern 100 children and teenagers who were taken into care by social services. Most of them are girls whose families have subjected them to physical violence. Often it’s the father who, as the sole perpetrator, beats the child, but one-quarter of the children say that their mother beats them as well. 

Several laws have been introduced or reformed in recent years to combat forced marriage, child marriage and genital mutilation. Also, the Swedish parliament approved a law that increased the length of prison sentences for those convicted of honour-based crimes. Yet very few of the cases investigated by SVT have led to a guilty verdict. In most cases, the children are too afraid to testify. 

“There’s massive pressure from the family, relatives and siblings to withdraw [the accusations], to minimise and downplay the violence,” says Professor Devin Rexvid at Stockholm University, who studies the work of social services in honour cases.

Showered in cold water

When questioned by the police, a girl who did not want to be forced into marriage confessed what had happened to her. 

“My mother said: “Instead of ruining my life it’s better if you die.” She put me in the shower with freezing cold water. Then she hit me across the shins with a metal ladle. And she used a mobile phone cord to whip me across my back as though I was a slave.” 

Yet, the girls often retract their stories before the case goes to trial. Earlier studies show that minors subjected to honour-related abuse often do not feel ready to ask for help. Yet third-party information shared with social services can lead to them being taken into care with no consent needed from them or their guardians. 

“There have also been a few cases with older girls, some as old as 19, being removed from the home. It has been seen as the final attempt to rescue them from being married off or from being genitally mutilated,” Rexvid says.  

“Controlled by society instead” 

One of them is Aisha. She is profoundly angry. Not with her family, who has spent a lifetime assaulting her, but with social services. She has grown up with honour-related oppression and abuse akin to torture. At the same time, she has withstood the pressure to get married. 

“Social services said it was courageous of me to put my trust in society, but I was let down,” Aisha says during one of many conversations about her situation.  

Aisha feels that the people who were supposed to protect her, the victim, have instead treated her as a perpetrator.  

“I thought they were going help me” 

SVT has investigated social services’ attempts to help these young people whose families subject them to a high level of violence with the aim of restoring the “family honour.” When Aisha was taken into mandatory care, she was placed in one of the juvenile facilities run by the Swedish National Board of Institutional Care (SIS). Known as “SIS Homes,” these institutions are used to house under-age convicts and/or young people who struggle with drug addiction problems or have a history of self-harm. These homes are often described as prisons.

When Aisha was placed in an SIS home, it was not because she had done anything wrong or been convicted of any crimes. She was locked up because the institution was the only place with enough security [to protect her against her family] and thus social services felt confident that her family could not gain access. 

“For the family, it’s shameful that their daughter has been taken into care by the authorities. She is disloyal, she is disobedient. She’s opened up the possibility of sexual relations. In itself, the situation is dishonourable. That’s the reason they’ll do their utmost trying to get her back,” says Professor Rexvid, who researches honour-related violence and oppression. 

“An emergency measure” 

Aisha is not alone. Many of the girls taken into care have been placed in [for example] safe houses, but SVT’s investigation revealed 20 cases where social services instead used juvenile detention facilities. 

The reasons behind these decisions include cases where the location of a safe house was disclosed when the girl has herself chosen to run away, or when the family has found and kidnapped her.  

“Generally speaking, I would say that we do not use SIS institutions, it’s an emergency measure,” according to the head of social services in charge region where Aisha was entitled to support.  

Because SVT cannot risk revealing Aisha’s current whereabouts, we will not disclose the name of the region in question. 

Social services: The only way to protect 

In a recording from a meeting with social services that SVT has listened to, a social worker can be heard telling Aisha that they placed her in an SIS institution to protect her from relatives who might want to “abduct her.” 

“[Previous] measures did not work. They found you. This was the only place available and SIS provides the only way to detain young people,” the social worker says in the recording.  

The head of social services was given the opportunity to listen to the recording but declined to comment on the decision-making process regarding Aisha.  

If the price of locking them up is that the young people lose confidence in you, then is it worth it?  

“It may be worth it, in which case you have to rebuild that confidence again,” the head of social services tells SVT. 

Rather return home than be locked up 

SVT has read almost 70 mandatory-care orders related to honour-related oppression and violence. We have found cases where girls who have previously been kept under lock and key in an SIS home have told the court they are so frightened of being sent back there that they’d rather return home.  

“[It doesn’t address] their experience of oppression, which just changes shape.  They have been controlled in their home environment and are now being controlled by the authorities instead,” says Johanna who runs a security company specialising in safe houses for women and children that are persecuted by their families.

Lost confidence 

Like many before her, Aisha chose to run away from the SIS home and she has lost every shred of faith in social services. At present, she’s in hiding in a different part of Sweden.  

Social services still have no solution to offer her. 

“If there is one thing that will stay with me for the rest of my life, it will be social services betraying me. They removed me from a violent home and controlling environment only to place me in an SIS institution where violence was commonplace. There’s nothing more controlling than being detained in the way I was.” 

Disclosed by the authorities 

The girls we have followed this autumn are in hiding. Every single one has a previous experience of their hiding place being disclosed by the authorities. 

Maria has also been let down by social services, even though they were the only place she could turn to for help.  

She was forced into marriage here in Sweden during the summer break between eight and ninth grade. At age 14, she moved in with her husband’s family but then convinced her father to let her come back and live at home until she turned 18. “Every time he came home to us, he raped me. My family could hear me screaming every night. It felt like everyone was deaf to me needing help. My mother was completely deaf when I screamed.” 

Maria managed to escape. But it took a long time before she would feel free. And neither of her parents was convicted of the abuse. The police closed down their investigation citing a lack of evidence. 

Need to learn more 

Sweden has failed to bring the parents to justice. An extremely small number of parents were convicted of child abuse. In many cases, the suspects were freed of all charges because their children were too afraid to testify.  

All authorities, the police included, need more knowledge in order to be able to help young people who live under honour-related oppression according to Hilda Ramsten, an officer with the police unit dedicated to investigating honour crimes. 

Between January and September 2021, the police have checked the “honour-crime” box in some 1,300 case files. But where these cases end up varies significantly. A police report can be forwarded to different departments of the police, depending on which category of crime the report falls under assault, coercion and threats, or violation of the child’s right to integrity.  Scattering cases across units has made it difficult for the police to assemble all the knowledge that exists across different departments about this crime. 

Few cases lead to prosecution 

Convincing a person subjected to honour crimes to be courageous enough to defy her family, report them to the police, testify in court, and then cut off contact is difficult.  

“Even if I were to report them, my father or my brothers ending up in prison doesn’t make any difference. I will still be hunted for the rest of my life by my uncles,” one girl told SVT. 

Police officer Hilda Ramsten says that their investigations often stall while the young person takes time to make the most difficult decision of her life: whether to testify or not. Without their cooperation, which is crucial to making a case hold up in court, the police have little incentive to actively pursue the investigation. 

“I have also had several young people tell me there’s an additional dimension [to their decision-making,” says Ramsten.” Even though there’s violence in their home, at least they have some sense of control of what’s happening: who knows what about you and what the consequences will be. But they have no control of their lives if they go into hiding.” 

Important to listen to the victims 

Ramsten says that it’s of utmost importance that we as a society start listening to the victims when making decisions about how to protect them.  

“Some girls choose to return to their family. I believe that the authorities have quite a poor understanding of why they chose to do so,” says Ramsten. 

To protect girls from honour-related violence and oppression, several measures can be put in place. Social services can take away their mobile phones, gain access to their social media account and, in certain cases, take them out of school. Always with the purpose of keeping their families away from them. 

“I was forced to ask social workers for permission to go to school, but they didn’t allow it,” says Sara, 16, who was taken into care earlier this year. 

School is considered a safe haven by many of the girls SVT has spoken to. A place free from the rules at home, a place where their family cannot control them.  

“My father and his relatives don’t think women should be educated,” says Aisha.  

Girls who have received help from social services taking them into care and then also out of school, in some cases for long periods of time feel like a betrayal because school and getting an education were supposed to help them get out of their situation.  

Girls’ addresses have been disclosed – and they have been killed 

SVT can reveal the mistakes that have put these girls in mortal danger. They should be impossible to find, but in several cases, the authorities failed to keep their whereabouts secret.  

“They’ve revealed my location three times,” says Maria. “ I stopped trusting them, believing in them. I’m too afraid to.”  

We have examined 30 of these cases where secret locations were revealed. In some cases, the person taken into care has been placed in the same city as their relatives. There are instances where social services have let their locations slip. In other cases, the police have sent a standardized letter, meant to notify the victim that their police report has been entered into the case-file system, to the parents’ address. 

Following some of these instances, the consequences have been disastrous. SVT has found cases where women have disappeared and some have been killed. Sometimes, it’s been a person that the girl trusts who have caved under pressure from her family and told them where she is. The authorities may not understand that those people have their own self-interest in mind because if they do not help the families, they themselves have broken the code of family honour.  

That means that, in many cases, a choice has to be made about whether to reveal the information or be subjected to abuse themselves.   

SVT’s investigation has also revealed that it’s equally common for the girls themselves to disclose their location, a phenomenon corroborated by experts and police officers.

Many run away from home  

Amal was 16 years old when she was persuaded to marry a man from her family’s home country. Her husband abused her for several years before she finally managed to escape. Many years have passed, yet her family have found her location time and time again, which means she leads a life on the run. 

“I have lost confidence in the justice system, to be honest,” she says when SVT meets her in her apartment. 

The curtains have been closed. They always are.  

She has turned for support to other women and girls in the same situation. They have met at support centres and shelters and helped each other with everything from giving someone a ride to offering them a safe place safe to stay. 

There’s hope 

Some of the girls we’ve followed have started over with a new identity and in a new town. They have wanted to tell us that living your life in freedom is possible.  

From sheltered housing all over Sweden come voices with glimpses of hope. 

One 15-year-old girl, who had been locked up in an SIS institution, tells us: “We must become braver and ask for help.” 

“I just needed help to take the first step, for someone to see me,” says another 19-year-old girl. 

 The 25-year-old is happy to be alive: “I am an LGBTI-person and come from a family that has a clan structure. I guess you can understand how that experience has been for me.” (Clan is an  accepted term in Sweden that refers to large families organized hierarchically and ruled by “honour”) 

The girls all agree: They have to tell their story for people to be able to understand. And it is important to have the courage to ask for help and to have the strength to build a new life for yourself. 

Maria and Amal now live in their own apartments and have jobs and new social safety nets. They would never tell anyone at work or at school the reason for their identities being protected. Once the word gets out, they’ll be hunted down again. 

“I think that social services have to acquire better knowledge. Every document they handle represents a life,” Maria says. 

Aisha, Maria and Amal have all been given pseudonyms.   

Woman’s body, man’s medicine

Our starting point is an androcentric medicine that has investigated manifestations in men and extrapolated the results to women.

It was thought that reproductive health was the only differentiating characteristic, but the symptoms, treatments and recovery for the same disease might not be the same.The biological differences, which are often invisibilised, explain only part of the health inequalities, which are also conditioned by gender roles.

The following are some of the specific characteristics of women’s health

1. Mental health: From mixed bag to overmedication

More cases of depression and anxiety
Worse living and working conditions for women, double working days (particularly for less qualified workers), domestic and care work, guilt and perfectionism can all have an impact on women’s health. Women are more likely to experience mental health problems such as anxiety and depression, which affect almost twice as many women (13.7%) as men (7.4%). Moreover, one in three women says they feel emotional distress, while in men this figure is one in five.

“It’s a mixed bag. Anything that happens to a woman is attributed to her being anxious or overstressed, without taking into account her working or care conditions. A pill isn’t the solution. We have to change living and working conditions.”

Carme Valls, Endocrinologist and author of Mujeres Invisibles Para La Medicina 

More anxiolytics
Women are more likely to be sent away with a diagnosis of mental illness at an initial visit than men; in the latter, an organic cause is immediately suspected and additional tests are requested. This gender bias leads to overmedication in women: 85% of psychotropic medications are administered to women. This overdiagnosis can also render invisible physical diseases that are hidden behind an incorrect diagnosis of mental illness or psychosomatic symptoms because they might not fit the “normal pattern,” i.e. the male model.

The taboo of motherhood
Another area ignored by science is mental health and motherhood. One in four women experience some kind of mental health problem, some more severe than others, during pregnancy or in the postpartum period, and most of them are not treated. This is not helped by the fact that the postpartum and nurturing period is a lonely time for many women. Traumatic childbirth, a difficult pregnancy, childhood trauma or stressful situations can trigger postpartum depression and the most common symptoms are sadness, hopelessness, emotional changes, insomnia or difficulty bonding with the infant.

2. Cardiovascular disease: Heart attacks are mistaken for anxiety

Leading cause of death
Cardiovascular disease is the leading cause of death in women in Spain, ahead of breast cancer. While men experience more heart attacks and women more strokes and heart failure, women are twice as likely to die in the event of a heart attack. The mortality rate of myocardial infarction is 9% in men and 18% in women. There are various reasons for this. It takes women longer to go to the hospital and their symptoms are often mistaken for anxiety.

“Cardiovascular diseases are very well differentiated in men, but in women, the diagnosis is much less specific and less cautious than in men. Fewer tests are carried out, assuming ‘the chest pain must be anxiety’. No. At the very least an electrocardiogram, imaging study or stress test must be performed to rule out an organic cause.”

Antonia Sambola, Cardiologist at Vall D’Hebron Hospital and expert in women’s cardiovascular health

Delayed diagnosis
Women seek care later, downplaying their symptoms or putting the care of others before their own, and this leads to delayed diagnosis. The symptoms are also confusing at times. Chest pain is a symptom in 90% of women, but they also have other additional symptoms, which are more intense than in men, including nausea, vomiting, dizziness and headache. “They also have chest pain and shortness of breath, like men, but by the time women go to the doctor the chest pain has already passed because they are already in heart failure,” adds Sambola.

More research
Practitioners are calling for more emphasis on cardiovascular disease prevention as there are risk factors in women that are largely left unaddressed and that are closely related to pregnancy and childbirth, such as preeclampsia, gestational diabetes and premature birth. “Menopause also increases cardiovascular risk. Has that been explained? There isn’t enough information. We’re completely lost,” acknowledges Elisa Llurba, Head of the Gynaecology Department at Sant Pau Hospital. Practitioners also call for campaigns to promote self-care.

3. Breasts: Between aesthetics and pathology

Aesthetic pressure
Breasts have been used to sell everything from cars to perfumes, but we have rarely studied what they look like on the inside. The breast has not been studied from an anatomical or physiological perspective. “It has become trivialised as something which is aesthetic rather than functional, and we have gone from not knowing anything about breasts to knowing only their pathology, breast cancer,” says surgeon Maria Jesús Pla. Furthermore, the depiction of a perfect breast has failed to take into account the fact that they come in all shapes and sizes. “The mammary gland is neither seen nor explained. We don’t know how it works, but they do teach us how the liver and kidneys work. Most women don’t know what the raised bumps on the areola of the nipple are called,” adds breastfeeding expert Alba Padró.

Breastfeeding
Over 90% of women who give birth breastfeed their children in the first few days, a percentage that decreases as time passes. There are multiple reasons for this, ranging from insufficient leave from work to a lack of breastfeeding support.

“Healthcare professionals do not receive specific training on breastfeeding and the training they do receive is not enough. Much emphasis has been placed on the benefits, a chapter that has since been closed, but not on the solution to the problems. You would expect paediatricians to be trained in breastfeeding but they’re not, and this is the first reality check: breasts are essentially no one’s territory.”

Alba Padró, Cofounder of LactApp and IBCLC breastfeeding expert

Breast cancer
Approximately one in every eight women will develop breast cancer in their lifetime. It is the most common tumour in women worldwide and in Catalonia, it accounts for about 30% of the tumours affecting women. Most cases are diagnosed between the ages of 35 and 80, with the highest number of cases between the ages of 45 and 65. The disease also has an emotional impact that other cancers might not have, as it is a more visible organ and has sexual and aesthetic implications. The challenge for these patients is to return to their work and sexual life.

“Surgeons must be sensitive to the aesthetics of the breast because tumours here have special implications. Conservative surgery rates are very high, at over 75%, and when this isn’t possible, immediate reconstruction is performed. You shouldn’t end up with a line. But it’s also important to remember that a woman is more than just two breasts.”

Maria Jesús Pla, Breast surgeon at Bellvitge Hospital

Controversial mammograms
Survival rates have increased with the improvement in treatments, as this is a tumour that is subject to a lot of research and early detection through population screening. In Catalonia, mammograms are recommended between the ages of 50 and 69 every two years, not annually. Routine mammograms are not recommended in women under the age of 50 with no risk factors. The effectiveness of screening in women between the ages of 40 and 49 is a controversial debate. “The disease is less prevalent and mammograms are less effective. If population screening were to be extended, it has been said that it would be better to do so amongst women between the ages of 70 and 75,” explains Maria Jesús Pla.

4. Respiratory Disease: Conditions on the rise among women

Lung diseases
Respiratory diseases that were considered to be predominantly male conditions have risen among women due to the increase in smoking. This is the case for chronic obstructive pulmonary disease (COPD), which, according to a study by the Hospital del Mar, shows more symptoms in women: increased breathlessness, increased muscle involvement and more lesions than in men with equally severe disease. COPD is a disease that is underdiagnosed in women. According to Carme Valls, there is a tendency to diagnose women with asthma when in actual fact it is COPD. Practitioners believe it progresses differently not only because of the biological characteristics of sex but also because of the sociocultural characteristics of gender. Women with this disease have a worse quality of life.

Lung cancer
Lung cancer, which is the leading cause of cancer death, is also on the rise among women due to the increase in smoking. It has gone from being the fourth most common tumour among women in 2015 to the third, and it is expected to continue increasing in the coming years, overtaking breast cancer. Meanwhile, it is expected to become less common among men due to the decline in smoking.

“Lung cancer used to be considered a male disease and this has likely led women to be less cautious with smoking. Perhaps there should be gender-specific public health campaigns aimed at women and young girls.”

Enriqueta Felip, Head of the thoracic, head and neck cancer unit within the oncology department at Vall D’Hebron Hospital

Long COVID
There are people, mostly women, who have already had an acute coronavirus infection but continue to have symptoms six months later. These are generally young women, between the ages of 35 and 50, who have a wide range of fluctuating symptoms including headaches, extreme fatigue, tachycardia, muscle and joint pain, breathing difficulty and memory loss. This even occurs after having had a mild form of COVID. The symptoms are similar to those of chronic fatigue, a condition with which they also share preconceptions and a lack of understanding. Long COVID is thought to affect between 10% and 20% of patients. There has been a lack of information on this condition for months, which has led to underdetection and those affected have at times felt questioned by the healthcare system.

5. Reproductive system and sexuality: Invisbilised diseases and the medicalisation of physiological processes

Silenced disease
There are diseases that only affect women, such as endometriosis, for which there is a lack of investment and research because, as scientist Maria Montoya from the Spanish National Research Council (CSIC) ironically puts it, “they only affect 50% of the population.” Endometriosis is the gynaecological disease with the highest incidence: it affects at least 10% of women of reproductive age, but this figure could be higher as the condition is underdiagnosed. It is a chronic disease, and its best-known symptoms are pain during menstruation, pelvic pain and infertility. However, the pain has become socially normalised among women to the point that a diagnosis can take up to eight years.

Obstetric violence
The healthcare system has medicalised normal physiological processes in women, such as pregnancy, childbirth and menopause, by imposing a paternalistic approach: seven out of ten women say they have felt belittled during pregnancy or childbirth. However, women are becoming increasingly informed and empowered and are pushing for a change in the care model, demanding more humanised and less medicalised care. “Depending on how we deal with childbirth, we can leave a young, healthy woman with a chronic condition, and the healthcare system and practitioners must be held accountable for this,” says Maria Llavoré, a midwife at Sant Pau Hospital.

“We are being self-critical. There is an element of unconscious structural violence, and the sooner we accept this, the sooner we can fix it. There’s no point in becoming bogged down in whether or not to call it obstetric violence. We can and must do better.”

Elena Carreras, Head of obstetrics at Vall D’Hebron Hospital

The caesarean section rate in Catalonia (27.4%) is still double the WHO’s recommended rate (15%) and is, together with inductions, an indicator of obstetric quality. Episiotomies, the Kristeller manoeuvre and overmedication are just some of the practices that have been criticised. But infantilising a woman or disregarding her consent is also considered to be obstetric violence. This respect applies not only to childbirth but also to miscarriages, abortions and infertility or assisted reproduction procedures. The Ministry of Equality, like the Catalan law on gender-based violence before it, plans to include obstetric violence as a form of violence against women in the reform of the abortion law. The Catalan Society of Obstetrics and Gynaecology and the four Catalan medical associations have recently acknowledged that obstetric violence exists and are calling for a debate, even though they have admitted that the term makes them uncomfortable.

Sexuality
Female sexuality has been invisibilised or is full of taboos and stereotypes, and pleasure and the female body have long been an unknown reality, even to women themselves. We have not received sex education, and the education we have received has perpetuated sexist models. However, more and more women are reclaiming their pleasure while making sexual and gender diversity visible beyond binarism. Beyond this, consultations related to sexuality are increasing because issues such as pain during sex and anorgasmia are no longer normalised.

“The level of ignorance about women’s bodies is appalling, even among some practitioners. The clitoris hasn’t been studied, it’s unknown, it’s not drawn and it doesn’t appear in photos. If we don’t talk about it, it doesn’t exist. If women don’t know where it is, they don’t know where to stimulate it.”

Maria Llavoré, Midwife at Sant Pau Hospital

Pelvic floor
Almost half of women (46%) have one or more pelvic floor disorders, such as urinary or bowel incontinence or pelvic organ prolapse. This has a major impact on their quality of life. Pregnancy and childbirth are key factors, but there are also other causes such as high-impact sport, constipation, ageing and menopause. Until recently, it was considered that, since no one died, it was simply accepted, but practitioners are calling for check-ups and treatment of the pelvic floor to be routine practice in the healthcare system and for there to be a prevention strategy: the pelvic floor should be discussed from an early age, and training should be provided in schools. Teaching how to do Kegel exercises should be like teaching them how to brush their teeth.

Gynaecological cancers
These cancers begin in the female reproductive system. They can affect the cervix (the neck of the uterus), ovaries, uterus, vagina and vulva. The risk increases with age and some gynaecological cancers are caused by the human papillomavirus (HPV). Girls and women between the ages of 9 and 26 can be vaccinated against HPV, and vaccination is recommended before becoming sexually active. If the vaccine were less expensive, practitioners believe that it would also be advisable to administer it to boys.

6. Joints: Women’s pain: an unresolved issue

Chronic pain
One in three women reports having pain or discomfort, while in men this figure is one in five. Women are more likely to experience chronic pain as most diseases that cause muscle or joint pain are more common in women. “Chronic pain is one of medicine’s unresolved issues,” says endocrinologist Carme Valls. Experts are calling for it to be addressed as a public health problem.

“It is important for healthcare professionals to consider not only the disease but also what comes before it: the living conditions that may have led to these disorders. Including the gender perspective is an improvement in care. You can’t take care of people’s health without taking into account their living conditions, which are very different for men and women.”

Lucía Artazcoz, Director of the Public Health Observatory of the Barcelona Public Health Agency

Physical and mental overload
Rheumatic and musculoskeletal diseases such as arthritis, osteoarthritis, back pain, osteoporosis and fibromyalgia are common causes for consultation in primary care. It is estimated that these conditions take up around 30% of primary care physicians’ time. Valls states in her text that the pain of many women is often silenced or rendered invisible with psychotropic medications and that studies do not take into account the physical and mental overload experienced by women in their lives and workplaces.

Fibromyalgia
Fibromyalgia is characterised by chronic pain throughout the body, particularly in the muscles and joints of the back and limbs, and hypersensitivity to pain, noise, smells and light. It can also be accompanied by cognitive and sleep disorders, gastrointestinal disorders and fatigue. It is a disease that occurs more frequently among women (4.2% of women and 0.2% of men in Spain), its origin is unknown and, in many cases, it is debilitating. Those affected can spend years going from one consultation to the next until eventually reaching the diagnosis of a highly stigmatised disease.

“The prevalence among women is huge. There are no doubt hormonal and pain perception factors involved, but we’re not really sure about this. What we do know is that the pain exists and that they’re not making it up. There are some very hard-hitting cases. What is the cause? That is up for debate, but the pain is real.”

Josep Blanch, Head of the Rheumatology Department at Hospital Del Mar

It is not without controversy. Carme Valls wrote in her text that “all kinds of muscle pain for which no explanation could be found have been attributed to this disease, with no objective evidence.” She questions the fact that it is treated with psychotropic medications and believes that more research studies are needed for women diagnosed with fibromyalgia.

7. Autoimmune Diseases: Complex diseases that affect women the most

Attacked by our own defences
Autoimmune diseases are those in which the immune system attacks the body’s own organs. It is estimated that one in ten people in Catalonia has an autoimmune disease. Some only attack specific organs, such as autoimmune thyroiditis, the most common form, which affects the thyroid gland, while other systemic forms involve a generalised attack. Sjögren’s syndrome is the most prevalent of these, but lupus is the most paradigmatic.

More women affected
Two-thirds of those affected are women and in some specific conditions this proportion is even larger: for every man with lupus there are nine women, and for every man with Sjögren’s syndrome there are six women. There are multiple reasons for this, but female sex hormones are a major factor, and “periods in which they are more active, from puberty until menopause” is when the most disease onsets and the most flare-ups occur.

“In the case of lupus, treating the kidney or nervous system is just as important as treating reproductive issues or skin lesions on the face, something that perhaps would not be as important for a man.”

Ricard Cervera, Head of Autoimmune Diseases at Clinic Hospital

Pregnancy
It also affects women of childbearing age, which has special implications. Forty years ago it was said that women with lupus would not be able to have children as they would miscarry and the disease would flare-up. Nowadays, they have similar fertility to the general population and pregnancies are more closely monitored.

The other bias
In this case, it is men who may experience a delay in diagnosis because, in theory, doctors find it hard to believe that a man might have lupus, for example. But when they do have it, it is more severe.

8. Research and Drugs: The effect of excluding women from clinical trials

Clinical trials
For decades there has been gender bias in clinical research. Due to hormonal changes and for safety reasons, women are often not included in clinical trials and this exclusion has led to gaps in knowledge. This is also the case for studies with non-human animals, in which two-thirds are male. When women have been included in trials, the results have not been segregated, meaning that the results are applied equally to both men and women, even though the participation of women is lower. “When you don’t segregate by sex, you don’t know the situation for either men or women, or the specific characteristics of each of them, and that’s bad science,” notes Lucía Artazcoz. But this is changing, partly thanks to COVID.

“Men and women react differently to the coronavirus and this must be taken into account. The disease is teaching us not to treat patients as a homogeneous entity and we can all benefit from this, as it enables us to adjust treatments or medication doses.”

Maria Montoya, Head of the viral immunology group at the Margarita Salas Centre for Biological research of the Spanish National Research Council (CSIC)

Adverse reactions
Excluding women from clinical trials means that adverse drug reactions are either unknown or take years to be noticed and for measures to be taken. Eight out of ten drugs withdrawn from the market in the USA between 1997 and 2000 had greater health risks for women than for men. As an example, statins, a widely used drug, have been shown to have more adverse effects on women.

The way in which the drug is metabolised or how we benefit from the drug is different due to metabolic and genetic history as well as hormonal issues. Again, there is little information available, or incomplete information, regarding the adverse effects of drugs on pregnant and breastfeeding women, and the coronavirus vaccine is an example of this. The information on COVID in pregnant women has been contradictory since the start of the pandemic.

“In oncology, chemotherapy is administered according to body surface area and this does not take into account the differences in body composition between the sexes. The patient’s sex also affects the absorption, distribution, metabolisation and excretion of drugs.”

Dorothea Wagner, Head of the Gastrointestinal Cancer Unit at Lausanne University Hospital

Dosage
It has been assumed that if a dose is appropriate for a man, it is also appropriate for a woman, but men and women are different in many respects, one of which is body mass. For example, men have 80% fat-free body mass and women have 65%, and this affects the way in which we metabolise a drug.

In oncology, “the same drug may be less effective or ineffective in one sex compared to the other, and we might have to use different drugs depending on whether the patient is a man or a woman,” Wagner adds. But this also poses a challenge because sex is not the only factor involved in the variability of responses to a drug. To this end, practitioners are calling for more clinical trials and the inclusion of non-binary genders, too.

Contraceptive pills
To downplay the risks of thrombosis of the AstraZeneca vaccine, they were compared to those of contraceptive pills, which are more common, and no one was surprised. Without criminalising contraceptives, which were a liberation for women, women are demanding that they be provided with full information about side effects. The risk of thrombosis is estimated to be 1 to 10 in every 10,000 women, making it a rare adverse effect, but we must be aware of the factors that may favour it, such as family history, being over 35, smoking, excess weight and hypertension. The other most common side effects include mood disorders, reduced libido, migraines, nausea and fluid retention. They are also prescribed for other conditions such as polycystic ovaries and endometriosis, and this may lead to other possible solutions not being investigated.

“Over time, instead of investigating any small changes in the regularity of the menstrual cycle or in the intensity of menstruation to diagnose the causes, they have been initially treated with normal contraceptives.”

Carme Valls, Endocrinologist and author of Mujeres Invisibles Para la Medicina 

The pills are said to “regulate the cycle,” but in actual fact they inhibit it. With contraceptives, there is no real bleeding because there is no ovulation. It is fictitious bleeding because during the break there is a sudden hormonal change. This is meant to mimic the female cycle because it is a way of reassuring women, but it is not really menstruation, although many women do not know this. “Why the male contraceptive pill has never been marketed is a matter for further reflection,” writes Valls. As for the relationship between contraceptives and breast cancer, there is much controversy and there are no conclusive studies, although Pla assures that “it has not been proven to be a risk factor.”

Menopause
On the other hand, hormone replacement therapy (HRT) with oestrogens and progestin, which is used to alleviate some of the effects of the menopause, such as vaginal dryness and hot flushes, has been linked to an increased risk of breast cancer and women are advised against receiving it for over five years. According to a 2004 study, 43% of women who were prescribed this were unaware of the risks involved in its use.

“Menopause research is needed. I have found very few studies on this and every practitioner has different answers. Natural or artificial methods? There is no clear evidence. We’re in limbo. Have women been asked what concerns they have about this stage? Because the needs of women nowadays are not the same as 25 years ago.”

Elisa Llurba, Director of the Gynaecology and Obstetrics Department at Sant Pau Hospital

9. Conclusion
No more, no less.
Just different

The paradox when we talk about gender and health is that women live longer but have a poorer quality of life. “They have diseases that don’t kill them, but they don’t let them live,” according to public health specialist Lucía Artazcoz. Socialisation and gender roles condition our health. Primary care practitioners see this on a daily basis. “When you ask women what makes them suffer, you see that we all have a shared experience that has an impact on our health,” explains Meritxell Sánchez-Amat, a general practitioner at Besòs Primary Care Centre, who is calling for more time per patient and more home visits to allow for a psychosocial approach, as “drugs are the quick and easy answer”. She believes that introducing the gender variable would help avoid medicalisation and overdiagnosis.

“But it’s difficult. It means going against the tide. As practitioners, we are part of this patriarchal society, and as a healthcare institution we are not self-critical.”

Meritxell Sánchez-Amat, General Practitioner and President of the Catalan Forum for Primary Care (FOCAP)

Gender-sensitive medicine and research are also closely related to the fact that there are more women in leadership and decision-making positions. “It is essential to change the way we look at things,” says cardiologist Antonia Sambola. Gynaecologist Elisa Llurba, who is calling for the Catalan public broadcaster to dedicate an edition of its annual TV3 telethon exclusively to women’s health, admits that she was previously unaware of this gender bias. “I didn’t see it until now, because I considered many practices to be normal and I hadn’t understood them from that perspective.” According to fellow gynaecologist Elena Carreras, “gender bias in medicine exists, and as soon as you become aware of it, it’s no longer an option to do nothing.” This benefits men as well as women, “because this outlook makes us question whether we are doing it right.” While women are overdiagnosed with mental health problems, men are underdiagnosed with depression, fibromyalgia and osteoporosis, which are more common in women. This approach should also be taken on at universities and in the continuing education of healthcare professionals.

Including sex is not enough
To break this bias, it is not enough to include the sex variable alone. We must also include that of gender. “We just assume that a patient is male or female, but there are individuals who are intersex. We also assume that patients are cisgender – when gender identity matches the sex assigned at birth – but we must move away from assuming and start asking. We need to be more empathetic with gender identities because this strengthens the science,” said Ewelina Biskup, Professor at the Shanghai University of Medicine and Science, at a conference on gender-sensitive medicine held at Vall d’Hebron Hospital. This is the first hospital to have created a health and gender committee, and the Department of Health plans to extend this to all centres to incorporate this approach into healthcare practice. As Artazcoz says, “we are still a long way from gender-sensitive medicine”, and the first step is to stop using men as a benchmark. “Women’s health is no more and no less than men’s health. It’s just different.”