The Last Witness
Kolya is lying in a cellar. The only thing separating him from the bare earth is a bit of Styrofoam to protect against the cold. The walls are moldy, the air icy and damp. Kolya wears two pairs of pants on top of each other, two pairs of socks, a cap and he’s wrapped in a blanket, he will later recall. And yet he’s still freezing. It’s March in Mariupol, and temperatures are dropping below zero.
There’s no more electricity and no water. No safety. Barely any food. The Russian army has surrounded the city, and now it is starving the population. Bombs rain from planes, Kolya can even hear them in the basement. A whistling noise followed by a tremendous thunder. The walls tremble as if he were lying in a house of cards that could collapse and bury him at any instant. A bullet recently hit the neighbor’s house and a man died. They buried him in the vegetable patch. They didn’t dare go any further because of the fighting.
Kolya’s sister Polina, 11, is lying next to him in the basement. She snuggles up to her father Vladimir, a slender, serious man. Polina is the youngest of the three children. Varya, 14, lies at Kolya’s feet. Next to her mother Natalia, whose corpulence keeps her warm. Between them is Kolya, who has just turned 17 years old.
He’s not religious, but he is praying right now. In his mind, he will later recall, he speaks the same sentence over and over again: Everything will be alright, we’ll get through this. But he doesn’t really believe what he’s saying. Kolya is certain he’ll die in Mariupol. And his family with him.
Before February 2022, Kolya had been a teenager who had discovered his love for Metallica and dreamed of changing the rigid Ukrainian school system as a civil servant. His sisters Polina and Varya were fond of folk dances and painting. Parents Vladimir and Natalia, both 47 years old, sometimes lacked the energy for three children. But after many conflicts during puberty, Kolya was growing closer to them again.
Today, six months after the start of the Russian war of aggression, they are dead. Polina and Varya, girls with long braids and high cheekbones, were likely killed by debris in the basement of their home. Vladimir, the father, died in the apartment, perhaps he had gone upstairs to get some air. The body of their mother still hasn’t been found to this day, presumably her body got pulverized by the explosion.
The only one still alive is Kolya, a child from whom the war took everything: his home, his family, his future and even his past. He no longer has anything except a pair of jeans and wool socks knitted by his mother. Kolya’s clothes, his identity papers, the people he loves – all these things lie under the rubble of Mariupol. Just like the other tens of thousands killed by Russia in its campaign against Ukraine.
A few days after the invasion in February, the Russian army cut off the city’s connection to the outside world. The network collapses, and it’s not a coincidence. The world isn’t supposed to see what is happening in Mariupol. To this day, there are few images from the city, and Russia has dismissed the ones that do exist propaganda.
But Kolya witnessed what happened in Mariupol. He is able tell you about it without hesitation or faltering, as clearly and distinctly as only someone who has nothing left but their story can. To corroborate his account, DER SPIEGEL spoke to Kolya’s former neighbors and friends. Videos and satellite images provide proof of the destruction of his childhood home. But only Kolya can still report about his family. He says he owes it to them to speak out about what happened. If he couldn’t save them, the world should at least be told how they died.
“My family is from Mariupol, but I was born in Donetsk, on December 19, the day of St. Nicholas. My parents named me after him: Kolya. They had to wait nine years for a child. The fact that they were able to then have daughters gave my parents great joy.
Dad worked in a steel factory and Mom was an accountant. They worked like slaves. Together, they earned 23,000 hryvnia a month, about 600 euros. It was enough for a small house. Varya and I shared a room, Polina slept with Mom. Dad slept on the sofa in the living room.
He was on shift duty and often had to work at night. He was always tired. Dad and I fought over little things, like the fact that I was supposed to do more to help around the house than my sisters. Today I think: how silly.
In the end, though, I would say the relationship in our family was ideal. All the problems seemed to have dissolved. Maybe also because I had grown up and become more serious. I could understand my parents and sisters better. Our lives had just begun.”
On February 24, a Thursday, Kolya wakes up to go to school. He’s still in bed when, half asleep, he hears his mother tell the girls in the room next door that class has been cancelled. Putin has declared war on Ukraine.
Many people in Mariupol still believe they’re safe. They believe that the troops won’t harm them. Putin allegedly wants to protect the Russian-speaking population with the attack, and it would be hard to find a Ukrainian city that is more Russian than Mariupol. More than 90 percent of the residents speak Putin’s native language in everyday life. Many feel closer to Russia than to Ukraine.
Kolya’s parents count among those people. They grew up in the Soviet Union, they speak Russian with their children and they stay out of politics. Their only desire is a modest, worry-free life. They hardly cared at the time whether that be under the Russian or Ukrainian flag.
During the first hours of the war, Kolya’s family, whose last name will not be used here to protect Kolya’s identity, buys food, but they don’t flee. They wouldn’t even know where to flee to. They’re simple people without relatives or relations abroad. Kolya never left Ukraine before the war. The family decides to ride out the Russian attack like it’s a thunderstorm.
As Kolya and his parents wait in line in the few supermarkets that are still open, the Russian army draws a ring around Mariupol. Already in the first hours, Putin’s military had shelled residential buildings and a school. Nevertheless, three quarters of the inhabitants remain in the city. They trust their “brother people,” who are pretending to protect them.
Kolya’s family is holed up in their building, a one-story structure on a quiet side street. The parents get out games for the children, and Vladimir, the dad, watches “Lord of the Rings” on TV. The shelling is still far away, and they can still tell themselves that the war isn’t affecting them. Kolya leafs through books he would otherwise have no time for because of school. He gets caught up in George Orwell’s “1984,” a story about a country turning into a totalitarian surveillance state. Between explosions, Kolya thinks about how much the plot reminds him of Russia.
“In the early days of the war, we even had online classes. There were explosions outside, but the teacher was talking about how we should do our homework. Everyone believed the Ukrainian army would be able to hold out in Mariupol. That it was only a matter of time before everything would return to normal.
One evening I was watching Star Wars with my friend Vika, with each of us as our own computer. Vika and I know each other from school, we have been a couple for two years. Her family also stayed in Mariupol. We lived only 10 minutes from each other. Visits weren’t possible, but we shared our screen on Skype and watched TV together.
Suddenly, the picture froze and the sound stuttered. I said: Vika, I can’t hear you anymore. Then there was a bang outside, sparks flying in the sky. The power went out.”
The Russians cut more than a dozen power lines in the first weeks of the war. After that, the only things providing warmth were the open fires many lit on their balconies. By now, at the latest, the residents of Mariupol are coming to realize that Russia has deceived them. But it’s too late. The way out of the city is already mined and blocked.
“It was freezing cold at home. We wore four sweaters on top of each other and also wrapped ourselves in blankets. It didn’t help, it was always cold. And then, just when we thought things couldn’t get any worse, the water disappeared.
At first, it was still dripping out of the tap. At some point, though, nothing came at all. That was the beginning of the apocalypse – I don’t have any other way of describing it. We lived like savages. We could no longer wash, and instead of a toilet, we used a bucket or plastic bags. To get water, we had to leave the house and go up the street, where there was a spring. The path was dangerous and the water was dirty. We boiled it over the fire. But it still tasted terrible.”
In the beginning, the family still lives in the house, they sleep in their beds and eat at their table. Although the rumblings of war are approaching, their dad initially refuses to prepare the basement as a shelter.
Each family member is confronting the threat differently. Kolya’s dad Vladimir with stoic denial, his mother Natalia with concern for her children. Polina, the youngest, is overcome by nervous hysteria: Instead of crying, she laughs herself silly all the time. Kolya, for his part, shakes uncontrollably, and he is no longer in full control of his hands and legs. He can barely sleep at night out of fear he won’t live to see the morning.
Then a shell strikes their neighborhood for the first time. Screeching, it flies over the building before dropping on its target with a bang. The ground shakes like an earthquake, Kolya feels it too.
The Russians destroy a gas station located only 200 meters away. Why, Kolya asks, would you fire on a gas pump? Russia, he says, explaining the attack, doesn’t even want to leave a few liters of gasoline for the population.
After the attack, the family does move into the basement, which is barely 1.70 meters high. They usually store canned cucumbers and tomatoes here, supplies for the winter. But it has now become the place where they sleep. They find some Styrofoam panels in the garage that they had bought to insulate the house. They lay them on the ground and place all the blankets they can spare on top of them. They only go upstairs to fetch water or to cook on the fire.
Kolya hates the basement. The walls are covered with mold, and there’s barely enough room for the family. But it muffles the sound of the carpet bombing of the city.
“The building shook with every impact. Dust settled on my face. I used to be ashamed of getting close to my parents, but now I wanted to be as close to them as I could. I took turns hugging my Dad’s and Mom’s shoulder, telling them I loved them.
Every day, I was prepared to die – even if I couldn’t understand what for. I was lying in the basement, listening to the explosions and wondering: Why was I brought into this world in the first place? Will I ever accomplish anything to be remembered by? Or if I die now, will it be as if I never even existed?”
Kolya, a child of 17, utters these sentences with the seriousness of an adult. During hours-long interviews with DER SPIEGEL, he doesn’t cry once – he doesn’t even sound accusatory. He just talks about what happened to him, and sometimes it seems as though he’s surprised anyone actually cares.
In the second week of March, Kolya remembers, a Russian rocket hit the building next door. And then further buildings on the street. When the bricks burst from the heat of the explosions, the sound penetrates all the way down into the basement. When, in a quiet moment, Kolya steps out onto the street, the asphalt in front of his door looks as if it has been dug up.
Kolya’s building is also slowly succumbing to the war. A blast wave damages the roof and the windows burst. The chandelier in the living room crashes down, along with part of the ceiling. At one point, an explosion is so powerful that parts of the kitchen walls bury the basement hatch. It’s only with a little luck that the family are able to dig themselves free.
It now just feels like it will only be a matter of time before they die. There are few search teams left in Mariupol. People who are trapped – and there are many – are rarely rescued. People are dying in their basements, in their living rooms, in a school and in the theater where hundreds of people seek refuge. Ninety percent of all buildings in Mariupol are damaged during the war. Anyone who has seen images of the bombing, of rockets indiscriminately launched at the city, inevitably wonders how anyone could survive here.
Vladimir, Kolya’s father, presses himself against the farthest basement wall day and night and stares into space. Kolya’s mom is no longer able to calm the children. Once, she wants to stroke her son’s cheek, whisper to him that everything will be all right, but when Kolya feels his mother’s hand, he collapses. Natalia’s skin is scratchy like sandpaper, scraped up from the debris. She notices his defensiveness and bursts into tears. “Is it my fault our building was bombed?” she cries. Then they cry together, mother and son, both helpless and vulnerable. This moment burns itself into Kolya’s memory – he still remembers every detail months later.
When the Russian shelling subsides somewhat, Kolya musters up his courage. He hasn’t heard from his girlfriend Vika in two weeks, he doesn’t even know if she’s still alive. He decides to take the 10-minute journey to her home to see she she’s doing.
Kolya’s home, part of a quiet residential neighborhood, had seemed especially safe to him at the beginning of the war. But Vika lives in a 14-story building, visible from far away – an ideal target for the Russian army. When he arrives at Vika’s building, it’s almost unscathed.
Of course, there’s no guarantee the people will survive here either. Here, too, people are buried in the yard; and here, too, residents are running out of food. But maybe, Kolya thinks, it would make it easier for him if he lived with Vika for a while. His family would have more room in the basement and one less person depleting the supplies. Vika’s parents agree.
“When I went back home, I said: Mom, I’ll probably move in with Vika. We were totally crammed into the basement. She agreed.
I packed a few things. Then I wanted to say goodbye. I don’t remember what my sister Polina was doing at that moment, but Varya was sitting in the basement, crying. She had always been strong, but she could no longer handle it. I stroked her head and tried to comfort her: We’re going to make it, everything will be OK. Please don’t cry.
When I was almost out the door, I turned back to my father. I said: Dad, I’m leaving now. He had been in a state of shock for days, lying on the floor and breathing heavily. Dad sat up, looked at me and said: ‘Well, go.’ It was the last time I saw my family alive.”
On March 10, Kolya moves from his parents’ house to his girlfriend Vika’s apartment. Meanwhile, the third week of the Russian war of aggression is raging. The first mass grave is dug in Mariupol. On March 13, the municipal government reports that the last water and food supplies have been consumed.
Vika’s family prepared and have supplies. They stored pasta and grits, and even the gas tank in the kitchen is still filled. Kolya can hear the impacts here, too, but at least he is no longer crouching in the cramped basement, but in a windowless hallway, the safest place in the apartment.
Vika, now 16 years old, seems lively and bubbly, Kolya serious and composed. They both like Nirvana and astrology, wear dark clothes and have a penchant for mysticism. They pass the time by talking about the war: What are the odds that Russia will win?
But it’s a useless endeavor: There has been no mobile phone network and no news for weeks. They can only guess the course of the front. Instead, Kolya and Vika consult their tarot cards. Vika pulls the card with a man standing on a hill, his gaze fixed on a sea full of ships. They conclude that a fleet will come to save Mariupol.
The reality, though, is that Mariupol is falling, district by district. In mid-March, there’s a sudden knock at the door of Vika’s apartment, with a man’s voice demanding in harsh Russian: “Open up! This is an inspection!” Putin’s soldiers are standing at the doorstep. They search the rooms and threaten to take the men away. Kolya is too young for them, and Vika’s father happens to be out looking for food. The Russians are combing all the floors, and shots are fired on one of them. Later, a neighbor tells Kolya that two bodies have been carried out to the street.
The Russian army now controls Vika’s neighborhood, and the shelling shifts to the southwest, where Mariupol’s main military unit, the Azov regiment, is still resisting. The fighters have retreated to the local steel factory, and Kolya’s family lives nearby. When he looks out the window, he sees Russian tanks being refueled and then driving off in the direction of his parents’ house. Kolya says he feels like he was a traitor. As if he had abandoned his family.
That’s also why he decides to stay in Mariupol when Vika and her parents leave the city. Since Russia has control of large parts of the area, it’s possible to get to Crimea. On March 21, his girlfriend gets into the car and drives off. Kolya stays in their apartment on his own.
“When everyone was gone, I burst into tears. I thought: What do I do now? Would it have been better to go with them? But I wanted to wait until my parents showed up. I was sure they would come for me at some point. And then I wanted to be there so they wouldn’t have to worry.
It wasn’t easy living alone in the building. The gas had since run out. I had to cook with fire and I had never done that before. Fortunately, a neighbor helped me. A family that had stayed in Mariupol lived a few floors above Vika. The man’s name was also Kolya. One of his sons spotted me on the balcony trying to make myself something to eat. He told me how to do it, and they also gave me some food later.
One night, it was March 24, I dreamed about my parents. I saw my father standing in the yard of our building. He had no arms left, as if someone had chopped them off. I screamed: ‘Dad, Dad, what have they done to you?’ Then I woke up. I didn’t know what the dream meant.”
The next day Kolya asks a neighbor to accompany him to his parents’ house. It’s a potentially deadly journey because of the fighting, but he wants to see how his family is doing. By now, all the remaining residents know the boy who lives alone on the fourth floor. The neighbor, a devout Christian, agrees to go with Kolya during a a break in the shelling. They say a last prayer and then they set off running.
They head in the direction of the Prospect of Metallurgists, a central avenue that was leafy during more peaceful times and filled with neon signs. Now buildings are shot up, trees have fallen and street lights are strewn all over the place. There isn’t a human in sight.
The first streets in Kolya’s neighborhood give him hope: The homes are battered but not destroyed. He sneaks around mines left by the army along the way. Finally, he’s standing in front of the gate to his house.
At first, he thinks: everything as usual. Then he looks again – and realizes that his parents’ home is no longer standing. Meter-high chunks of stone are piled up where the dining room once stood, the ground is churned up like a field. Bricks are lying on the wood, the ground and on pieces of furniture. Kolya’s home, the place where he spent his whole life, looks like someone ran it through a meat grinder.
“I looked at the ruins and didn’t grasp what had happened. I called for Mom, for my Dad, for my sisters. I ran around the house looking for the basement hatch, trying to squeeze through the rubble to them. But it couldn’t be done, it was too tight.
Suddenly, the neighbor said: ‘Kolya, look, there is a piece of clothing or a toy. What is that?’ I looked, it really looked like clothing, perhaps with fur trim. I moved closer and realized: It was Dad. He was lying face down, most of his body buried. Only his hands and head stuck out. His eyes were squeezed shut, his nose broken. He looked as if he had aged decades.
I began to dig for him with my hands. I was certain: If I managed to get him out, he would get up and run. But then I touched him with my fingers and his body was completely cold and hard. My Dad no longer felt like a person, but like a bag of dirt.
I lost it. I screamed, I cried. I yelled that I loved him. That I was sorry because I didn’t say goodbye the way I should have. Because I really thought this war wasn’t going to hit us.”
In the days that followed, Kolya tried to shovel his family out with the help of neighbors. One helper recorded the rescue attempts on a mobile phone: You see people pressing against the concrete with spades and metal rods. They couldn’t do it. Only an excavator could lift the debris. And there have been no excavators to dig out people buried in Mariupol for a long time.
Videos of a rescue attempt like this are also a rarity. In Mariupol, where there is no electricity, most mobile phones are out of juice. But a neighbor in Vika’s apartment building deals in electronics and happens to have a solar panel. He regularly charges his phone on it and films what is happening around his building. Dozens of recordings document the Russian siege. One of them shows Kolya standing in the ruins of his parents’ home, his face frozen with shock. As he and the neighbors try to make their way to the basement, loud bangs can be heard above them.
“I didn’t know what to do. I wanted to look for my mother and sisters, but I thought: If we stay here any longer, I’ll wind up getting us all killed. And even if we make it to the basement, the chances that Mom, Polina and Varya are still alive are slim. People in the other buildings said the rocket hit our house on March 17. That was more than a week ago.
I squeezed through the rubble with a flashlight, almost to the basement. The hatch was slightly open. I called out, but no one answered. I saw that there were bricks in the entrance to the basement. I couldn’t see any people.
I briefly held out hope that maybe Mom and the girls weren’t in the house when it was hit. That they had gone to church to pray or something. But I also had to realize that this was unlikely. If Dad was in the house, then Mom and my sisters were there too.
I realized that we would not find them alive. And that we had to stop digging for them so we wouldn’t die as well.
I wish I had come sooner and brought them over to where I was staying. I could have saved them. I felt so guilty.”
Kolya returns to his parents’ house only once after that. He has a homemade sign with him: a peg, broken from the door of an abandoned daycare center, along with a piece of wood he found. He writes the names of his family on it with a black felt-tip pen: Vladimir. Natalia. Varya. Polina. Born between 1974 and 2010. Died on March 17, 2022.
Kolya takes a brick and hammers the sign into the ground in front of the destroyed house, as a message to the Russians, who have since also taken control over this part of the city. They will begin removing the rubble, and they should know that there are still people under the concrete. Kolya hopes that they will dig up and bury the bodies of his family. But probably, he thought at the time, they would throw them away like garbage.
After Kolya puts up the sign, he once again sees his father lying among the rubble. The sun is shining over the city now, spring is getting closer. The bodies are starting to decompose and Kolya can smell it.
He climbs over the debris of his family home looking for something to cover his father with. Amidst the rubble, he finds a green down jacket that belonged to his sister Varya. There’s a video of it: Kolya asked his neighbor to record the impact site. He doesn’t want anyone to be able to claim later that he made all this up.
It shows Kolya throwing the jacket over the corpse of his father. He looks for a second garment in the rubble and places it over Vladimir’s head. After that, he leaves the destroyed building and walks away, perhaps forever.
Why did Kolya’s family have to die? According to international law, civilians are given special protection in war. But no price was too high for Russia’s army to conquer Mariupol. The soldiers shelled residential areas and hospitals, escape routes and shelters. It was intended to make Mariupol residents feel unsafe wherever they were. It looked like chaos, but it was calculated hell.
A hell that Kolya has been left to deal with alone. His family is dead, his hometown destroyed. A young man left to cope with this catastrophe on his own. He spends three days in Vika’s apartment: He remembers crying, beating the floor with his fists and convulsing. There’s still no electricity, no water, barely any food. Kolya knows he can’t survive without help.
The neighbors living a few stories above him turn out to be his salvation. The father of the family, who share’s Kolya’s name suggests: “Move in with us. We’ll take care of you.”
“His son had once helped me to make a fire and his wife told me how to boil noodles. Otherwise, I barely knew the family. But the man immediately said: ‘You no longer have a father, so I will be like your father. We won’t leave you alone.’
He and his children were there when we tried to dig out my family. They were the worst moments of my life, and they experienced them with me. That brought us closer together. I also had no choice: I had no one and nowhere to go back to.
The fighting in Vika’s neighborhood ceased in April, but everything was destroyed. No one knew if civilization would return in a month or in a year. So, the family that had taken me decided to leave Mariupol. They had a few cans of gasoline on hand and two cars that were riddled with shrapnel but still roadworthy. We left on April 18.”
From the windows of the car, the buildings they drive past look like Armageddon. Entire sections of the city are burning, cars are shot up and turned over. Kolya remembers an “atmosphere of death,” with mines lying all over the road. And his fear of not surviving as they escaped. But they make it to the front line, the border between Russian-occupied territories and Ukraine.
In the town of Manhush, the family waits for a week in a line of cars of the people fleeing. Hundreds are waiting for Russia soldiers to conduct checks on their cars. When the time comes, many men are taken away, but Kolya and his neighbors are lucky. Because they have Ukrainian and Russian citizenship, the soldiers wave them through. Kolya, the teen in the back seat, goes unnoticed.
He only remembers some of the rest of the trip. He no longer knows how he found out about their destination, nor how they got the to border with the European Union. Nor how the officials waved him through even though he has no identification papers – they burned in Mariupol. He only knows that he arrived in early May in a country he had never heard of. A green and quiet place, surrounded by mountains. We are not publishing the exact place where Kolya lives in order to protect his privacy.
Since July 2022, Kolya has been living in a refugee shelter, with six people sharing a few square meters. The family with whom he fled Mariupol lives there with him. It’s cramped, but Kolya is happy he’s not alone. The conversations with his rescuers keep him in the present, like an anchor that prevents the past from sweeping him away.
He calls it “losing touch with reality,” and it happens to him a lot. When it does, he no longer sees the meadow in front of his house or the blue sky, but instead the ruins of Mariupol. The worst, Kolya says, is when he lies awake at night. He then stares at the ceiling above his bunk bed, and in his eyes, the room becomes the basement where his family died.
“I miss Dad most of all, maybe because I saw him dead. I remember how he laughed and how I hugged him. He was very warm and soft. Later, when I found him, he was so cold.
What were Dad, Mom and my sisters thinking at the moment of the explosion? Did they have time to realize that this was the end for them? Did they feel fear? I imagine what it would have been like to be with them. Then I get scared.”
Mariupol has been fully under Russian control since May 20. There’s still no water in many places, and residents collect it from puddles using buckets. Dead bodies aren’t recovered by search teams, but by volunteers who receive food in return. Some young men have recently been forced to do military service and fight against Ukraine, their own country.
Kolya knows this – he follows every report from the city. On the only table in his room, there is a laptop that is almost always showing the news. He manages not to let the reports get to him too badly. People who have experienced trauma often compartmentalize what they have experienced afterward, and perhaps this explains Kolya’s composure. There are two Kolyas: The one who lies awake at night thinking about death. And the one who tries to look ahead so that he doesn’t break.
Kolya is now attending six-hours a day of language school. He bought himself a guitar, and the seller even gave him a discount when he heard that Kolya was Ukrainian. He spends his free time doing homework and dealing with the bureaucracy of his new country. And with Vika, his girlfriend, who against all the rules of probability is with him again.
He calls her just before he leaves Mariupol. He tells her that he’s alive and that he loves her – then the connection breaks off. The next time they talk by phone, Kolya has already reached Western Europe.
Vika’s family is living in Crimea at this time, but they don’t want to stay there. On the phone, Kolya asks her to come to him. Vika agrees. At the end of May they fall into each other’s arms at the train station, and there’s a video of that moment.
Vika now lives with her mother in a hotel rented for refugees from Ukraine. It’s located just a few streets away from Kolya’s accommodation. They are attending the same language school and spend time together every day.
They formed a band together with other refugee kids, with the local youth center providing instruments. When Kolya is on stage there, he smiles between songs. He teases Vika, who only recently started playing drums, when she can’t keep up. In the evenings, they sometimes ride bikes that people had thrown away to McDonald’s and eat fries.
Kolya says he owes it to Vika that he’s still alive. He says that when he feels her gaze, it grounds him again, brings him back to the present. Then he’s able to focus on today and push yesterday away.
Kolya has two wishes for the future. One goes like this: He wants to become an interpreter and rent an apartment, move in with Vika and marry her. He wants to do his family proud, even if they weren’t able to live long enough to see it.
The second wish is about Mariupol. Someday, Kolya would like to walk along the sea there again. He wants to show his children where he lived and where their grandparents died. He wants to see his hometown in peace and in Ukrainian hands.
Kolya knows that moment may never come. There are rumors that Russia is planning to annex the city, which would make it unreachable for Kolya. Posters are already hanging in the streets emblazoned with the words: “Russia is here forever.”
A relative still holding out in the city recently wrote Kolya that helpers had recovered the bodies of his father and sisters. They have since been buried in a mass grave. Kolya hopes to one day be able to search for them and give them a proper burial.
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
- Mental health
- Cardiovascular disease
- Respiratory diseases
- Breasts
- Reproductive system and sexuality
- Joints
- Autoimmune diseases
- Research and drugs
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.”