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The Personal Cost of Life in Authoritarian Hungary

as told by a political scientist and former resident

A growing trend of authoritarianism in certain Central and Eastern European countries has been quietly stirring, with Hungary notably rubbing shoulders with Turkish president Erdogan and Russian president Putin. Though it can be easy to forget, countries, even the strongest of them, are made of people, and the personal impacts of a government’s authoritarian turn are far from trivial for the people being governed.

To understand the personal impacts that Hungary’s authoritarian turn has on its residents, I spoke to Kristin Makszin, an assistant professor of political economy at Leiden University College The Hague. 

Kristin studied for her Master’s in Hungary, and started a family there, but realized through her political research that the country was headed in a direction that she was unwilling to support. Kristin found that the government increasingly interfered with her life, first by publicly smearing George Soros, a wealthy Hungarian who helped fund the Central European University where she worked, and then by dictating which areas of research the Scientific Institute, her other place of employment, could delve into.

Post WW2, Hungary was under Soviet rule until the 1956 revolution, which lead to an increased welfare state and liberalising reforms.  After the fall of the Iron Curtain, the transition to democracy began, and talks of EU accession made Hungary a promising case for post-communist democratisation. After joining the EU, however, the country took an authoritarian turn that continues today.

Lessons from life in Hungary

Although she was eager to tell me about her research in the region, I also wanted to hear about her personal experiences there. I asked her about some lessons she learned from life in Hungary. 

Kristin had planned to settle in Hungary after marrying a Hungarian and having children there. She worked two jobs, was interested in her research and the research community, and spoke Hungarian. Although she was happy to settle in the small town outside of Budapest where her family lived, push factors kept piling up until the family decided to leave Hungary. To understand what drove that decision, I asked her why she left.

Why leave Hungary?

If I really want to be blunt, it was the government

The Central European University (CEU), where Kristin taught and did her PhD, was founded and funded by George Soros, a highly controversial figure in Hungarian politics. He was born in Hungary but left at 17, and went on to become a global philanthropist. Soros funded the Open Society Foundation, which supports the universal fight for freedom of expression, accountable government, and societal promotion of justice and equality. 

Soros’ organisations are often attacked by less-than-democratic governments, and when Kristin started to notice that the CEU was being threatened by the Hungarian government, it hit her hard. “That did hit me personally, because I know it from the inside. I know it’s not some liberal Trojan Horse with Soros hiding behind it. There’s really free academic research going on there” she said, and continued “when that started becoming the major point of attack, it did affect me”. 

The impact of the Hungarian government’s campaign against Soros leaked into Kristin’s professional and personal life, even affecting her children.

Impact of Hungary’s anti-Soros sentiment
Tracing the start of democratic backsliding in Central and Eastern Europe

Kristin rejects the ideas that Hungary’s authoritarian turn was inevitable, and that a wave of populism is sweeping the world. She doesn’t buy the international contagion argument, but acknowledges that the pattern of changes in the Central and Eastern European (CEE) region must be indicative of something going on. She offers her own explanation of what sparked these changes in CEE democracy.

In contrast to her current views, Kristin was actually hopeful about Hungary’s democratic future in the early 2010’s, but soon realized that the country was on a downward trajectory away from democracy. Listen below to hear her talk about the steps Hungary took towards authoritarianism. 

Hungary’s authoritarian turn

Much of the public fear and anxiety brewing over Hungary’s authoritarian turn stems from concern over Russia’s influence in the region. 

Anti-Erdogan protest in Budapest, November 2019
Influence of Russia

The idea that EU members like Hungary could be taking notes from, or even collaborating with, authoritarian powerhouses like Russia and Turkey haunts many proponents of the EU. To hear an informed opinion on the topic, I turned to Kristin.

With clear evidence of Hungary’s authoritarian turn, the role of the EU becomes questionable. From Kristin’s perspective, the EU becomes less influential over its members as it enlarges. “I think that by trying to overreach what was feasible, that put some cracks in the EU, so I’m not super optimistic about the EU as an institution” she said. 

In the audio file below, you can hear Kristin talk about the future of the EU, considering the growing power of the authoritarian-turning member states.

Future of the European Union

Though Kristin does not believe that Hungary’s authoritarian trend spells the inevitable collapse of European democracy, she does warn that “if Hungary is the future of the EU, I’m not sure that’s an EU we want around”.


A Method to the Madness

It’s Wednesday evening, and you’ve just left work to pick up a few groceries for tonight and the coming days. You don’t have a list, just an idea of what you want to feed yourself or your family and the basic nutrition you should be getting. You walk into your local Albert Heijn and join the seemingly chaotic mass of nightly shoppers. You may think your shopping patterns are practically random, but contrary to popular belief, there is a method to the madness.

The food industry devotes countless hours and resources to manufacturing the ideal supermarket structure to maximize shoppers’ purchases. This is the side of shopping that consumers rarely think of, and the one that grocery store employees focus on. 

One of these employees who operates in the unnoticed realm of strategic shopping is Anton Pluis, a 21 year-old team leader at Albert Heijn who is pictured here. He tells me about the different strategies Albert Heijn uses to guide shoppers’ product choices.

“The positioning of products is really important and a lot of money goes to that”, Anton reveals, “Brands can pay for placements, for example Coca-Cola pays a lot of money to be placed between the frozen foods like pizza and bitterballen, stuff for a party. They pay quite a lot of money for that space because it does increase sales.”

While it may seem trivial to shoppers, product positioning in stores is significant to companies like Coca-Cola.

Even on the box it says the sales are 5 times higher if you put it at the chips aisle than the soda aisle, there’s a real science behind it, it is really thought out.”

Of course, there is more to the story of supermarket food choices than simple store strategies. Nutrition is essential for a healthy life, and since stores can guide shoppers’ choices, I wanted to hear about how shoppers’ food choices affect their nutrition and health.

To shed some light on the nutritional side of the story, I interviewed Bernadette Keogh, a nutritional therapist, in her local Albert Heijn. Click the audio file below to hear her thoughts on the secret to mindful eating: moderation.

Listen: Bernadette on Moderation

Attentive customers may notice that there is even a uniform store layout for all Albert Heijns: shoppers always enter into the fresh produce, then go to the pre-cut vegetables and salads, then the meat and fish, and then the bread. After this comes the dairy section, and then the paths with aisles of food items like cereals, sauces and chips, then the frozen section and finally, closer to the registers, are non-food products such as cleaning supplies.

Again, this layout could be perceived as unimportant, but Anton admits that “beginning with fresh products brings shoppers in the mood to buy, especially the smell of the bread, it makes you hungry and makes you want to buy more stuff.”

Anton reveals another measure employed by Albert Heijn to maximize profit: using your eyes against you. Stores know which products are the most popular and “We put those at the bottom”, Anton says, “then you have another point at eye level that you can influence, so you can put a product that is more expensive or something that you have too much stock of.”

The trick of us putting products in specific places is basically just the quickest way for people who are shopping who don’t care and just buy what is in the discount.

Though no harm is meant by this, these simple methods often result in a benefit for the store, at the cost of the wallet of the inattentive customer. Of course this is expected, and Anton states the obvious fact that stores’ first and foremost priority will always be making money,and I think that’s more than fair.”

Shoppers’ wallets are not the only thing affected by store strategies, their health can also be compromised. Bernadette had some insights as to why food choices are so important, and even how diseases can be prevented by a healthy diet. Listen below to hear her talk about the effects of food choices on health.

Listen: Bernadette on Food and Health

Some strategies used by grocery stores are actually helping consumers make more informed choices, like these sugar indicators at Albert Heijn. They use a range of 3 groups (low, middle, and high) to quickly alert shoppers about the amount of sugar in their chosen products.

This is not only helping shoppers make more informed decisions, but also influencing the products companies sell in stores. Anton tells me “Companies, as soon as the indicators came, started offering alternative products in each range of the sugar indicator.”

However, nutritional therapist Bernadette is not convinced that these sugar indicators are enough to inform shoppers of just how healthy their choices are. Hear what she has to say about this Albert Heijn strategy by clicking the audio file below.

Listen: Bernadette on Sugar Indicators

Introducing these sugar indicators is a great step forward in helping consumers be more aware of the healthiness of their food choices, but customers can also find this information without the indicators.

Overall, Anton encapsulates it quite succinctly when he says “It’s a tool and its useful and its forcing brands to make less sweet items also, but it’s not an innovation, the information was already there.”

While grocery stores like Albert Heijn may employ the use of strategies like deliberate product positioning and calculated layouts to guide shoppers’ product choices, consumers could always access all the nutritional information by checking the labels themselves.

To get some insight into how the average shopper makes their food choices, I walked into my local Albert Heijn and asked some shoppers to answer a few questions about which influencing factors they notice the most.

The photo series below showcases some quotes shoppers gave me about their food choices along with pictures taken inside Albert Heijn.

So the next time you’re on your way home and rush in to join the evening crowd at your local grocery store, see if you catch yourself being drawn to a flashy label at just the right eye level, or notice when you’re buying chips that, hey that coke right next to it might be nice too.

If it’s too overwhelming to think about all those store strategies and unconscious preferences, click below to hear some simple tips from Bernadette to help keep your food choices in line with your health goals.

Listen: Bernadette on Tips for Shoppers

One food choice has been made


Credits: Donald Trung 2018

Humans, Not Avatars

Let me tell you about a moment of clarity I had very recently. 

I was pushing through the packed halls of my university, just trying to make it to my next class of the day in one piece. Suddenly, I bumped into a girl I had never talked to before, yet still recognized by name: Sara Kemppainen, Class of 2020. Despite never having interacted with her in person, the immediate link my mind drew upon seeing her was successful, untouchable, daunting. I quickly ducked my head and mumbled a brief “sorry”, and this could have been where the moment ended. But for whatever reason her own apologetic smile stayed with me and abruptly I realized: I had never once talked to Sara, yet had still made up my mind about her in a split second. But more importantly, I had made my judgement based entirely on what I had seen of her online, on her social media accounts. 

Our online personas are caricatures of who we are, yet being confronted with perfect, glamorous lives constantly makes us feel pressure to become our avatars in every aspect of our own lives as well. This is a reminder that we all have the same insecurities, and that even those who seem polished and professional online, are much more than their online accounts.

I too had had an interaction with an online avatar, not a human being. But I was curious to see who the latter was.

To me, Sara Kemppainen is young, Finnish and utterly committed to changing the world.

A first glance at her Instagram account shows she is wildly intimidating. An honors student at Leiden University College in The Netherlands, a fitness enthusiast, the founder and chair of her own association “WIL,” a hand-picked representative at the 2019 G(irls)20 Summit in Tokyo and an intern at a humanitarian tech company. 

In other words: passionate, committed, seemingly unstoppable. And a calculated image meant for outsiders.

When she first opens her door, letting me step into her one-room apartment, it is everything I expected and more. The mood, the setting, the atmosphere feels as if nose-diving directly into a real-life Valencia filter. Every item seems to have an artistic purpose, be it the tulips on her dining table, the oriental carpet covering the floor, or the two patterned dresses hanging against the wall. 

But Sara herself, the mastermind behind the image, is so much more than the cool and professional young woman I had originally anticipated.

She looks relaxed, at ease, as she goes effortlessly through the motions of making avocado on toast, granola and Greek yogurt while chatting aimlessly about this and that. She’s excited to talk to me, she says. Social media is something she thinks about a lot.

Sara, I realize throughout speaking with her, is incredibly aware of the benefits and the pitfalls of social media platforms. For her, it began after returning to Finland from a two-year stay at an international boarding school in Italy. The student community there had fostered wonderful connections, the Italian internet access less so, and thus social media had never played a role in her life. After all, everyone she had wanted to share the details of her life with at that time was constantly around her. Upon moving back to her home country however, things changed.

“Suddenly everyone had social media accounts, and then I kind of got lumped into it too,” Sara recalls, a thoughtful look in her eyes. 

She enjoyed it at first, she explains. “Sometimes I miss the early Instagram days. In the beginning it was a lot more about visually representing life. It didn’t have to be accurate, or include everything you do. It was just whatever I felt like posting that day.”

How much do I include? Am I being annoying? Am I putting too much, too little of myself out there? For a while, these were questions regularly at the forefront of Sara’s mind. 

And not just of Sara’s, but of all of ours’. 

To be active on Instagram today means to learn how to exist in multiple realities at the same time. We are constantly both within our experiences and outside of them. Being in the moment, while at the same time observing it, to assess whether or not it’s worth sharing with others. In a way this has made us publishers: always trying to find unique stories to tell and permanently aware of what the competition is trying to sell. 

But this obsession with our online image, that carefully crafted personal brand we’re trying to communicate to the world, has skewed our perception of ourselves and others. We constantly feel the pressure to be our online avatar in every aspect of our lives, and when we fail to live up to it despite knowing this to be unrealistic, we take it out on ourselves.

We haven’t just lowered the walls between public and private. We’ve taken a wrecking ball and flattened those barriers, edited out any form of messiness left, and have accepted that to keep up the image we want others to see, we need to live a life of constant self-surveillance.

“If there was something I should have posted about, it would have been that trip,” she smiles, nostalgia evident in her tone. “But I lost all my pictures.” 

The series of unfortunate mishaps – a precariously placed water bottle next to her laptop, a push and a shove leading to a phone on the floor – ended up being a blessing in disguise however. “Even the idea of going through all those pictures, choosing and picking and editing. As much as it can be fun, it’s also a huge amount of pressure and work,” she explains. “I know what I went through. I don’t need those pictures to remind me.”

Since then, Sara’s perspective on social media platforms has shifted. Instead of wanting to paint the perfect image of herself, today she sees her Instagram account as a tool to keep her friends all around the world updated about her life. In a way, her profile is her modern-day diary; something to turn to when feeling the need to trace back memories and be grateful for the opportunities and experiences she has had.

Nevertheless, she knows that her profile does not accurately reflect her as a person. And it never can. “You’re always leaving a lot behind, because you’re not taking pictures of the times that are hard. And even if you are, you are still picking and choosing and modifying the way in which you portray your life.”

Instead, her Instagram account is a collection of moments, all adding up to the image of the person she aspires to be, that she likes and appreciates, and that she wants to make other people aware of. 

“Comparisons on social media are exhausting. Someone will always look a bit further ahead than you are, a bit more organized, like they’re having a bit more fun,” Sara sighs. This can motivate, but it can also merely make you feel lost.

“Sometimes it feels like you need to represent all aspects of your life, and that shouldn’t be necessary,” she says. To her, it’s a question of intimacy, and she herself is in control of what audience, strangers or friends, she wants to share that with.

“If there’s one place in the world, Instagram is the one you can make what you want it to be,” Sara tells me. And she’s right. By double-tapping the posts we do, we choose the kinds of posts that are promoted to us.

The algorithm does not need to control us. We can control the algorithm.

When I ask Sara to take a picture of herself as she would for her Instagram account, she laughs before agreeing. I watch as she tests first this angle, then that one, as she moves from one spot of the room to another with better lighting. “This is a little confronting,” she admits as she goes through her photo editing process with practiced ease. “It’s kind of embarrassing how natural this feels.”

More than an hour has passed and my mug of tea is empty. But before I leave I capture my own image of her.

Sara Kemppainen is young, Finnish, and utterly committed to changing the world. 

But she is so much more than just her Instagram account.


Changing the Face of the Schilderswijk

In July 2015, the Aruban Mitch Henriquez died a day after being arrested at the Zuiderpark in the Hague. Because he claimed to be carrying a gun, police officers held him in a prolonged choke hold, used pepper spray and hit him in the face. The initial pathologist’s report showed that Henriquez had died as a result of the choke hold.

This death enraged many inhabitants from the Schilderswijk in the Hague, a neighborhood with a history of tension between the police and its large ethnic minority population. In the days following Mitch Henriquez’s death, riots broke out in the Schilderswijk with protesters attempting to storm the police station.

Nightly riots in the Schilderswijk after the death of Mitch Henriquez

Ever since 1893, when Journalist Johan Gram wrote about the poor living circumstances in the Schilderswijk, the neighborhood has been known as the most famous problem area of the Netherlands. Gram described the houses in this neighborhood as ‘thin and draughty cubes of carton’ where no one with the will to live should want to reside.

Throughout the 20th century, the neighborhood was known as a working-class district. However, from the 70’s onwards, immigrants started moving into the Schilderswijk which caused it to become a highly multi-cultural neighborhood. Currently, 9 out of 10 inhabitants have a migration background. The Schilderswijk retains its image of a working-class neighborhood, as in 2014it was the poorest neighborhood of the Netherlands.

Listen to find out what it is like to live in the Schilderswijk and how this has changed over time.

The riots surrounding the affair of Mitch Henriquez symbolize the existing tension between the police and the inhabitants of the Schilderswijk. Corina Duijndam’s research into the attitudes of youngsters from the Schilderswijk towards the police showed that a significant part of the youth views the acts of the police as racist.

However, this does not necessarily mean that the police from the Hague is guilty of discriminatory practices. Since Professor Joanna van der Leun from Leiden University concluded in 2014 that the Hague police could not be accused of ethnic profiling.

A voice of change

However, there are many inhabitants from the Schilderswijk that actively try to move away from the tension of 2015 surrounding the affair of Mitch Henriquez. With his business called NextProjecten, Mohamed El Khadir (42) tries to bridge the gap between the authorities in the Hague and the youth from the Schilderswijk who do not always feel understood according to Mohamed, “whether that is justified or not”. After being born in Marocco, Mohamed moved to the Schilderswijk at age 6 and has lived there ever since. With NextProjecten, Mohamed coaches and empowers youth from the Schilderswijk so that they develop their talents and become more resilient.

For Mohamed, the riots surrounding Mitch Henriquez’s death felt like a step back from what he had been trying to teach the youngsters through NextProjecten. “Every night I was trying to talk sense into the youngsters that were involved in the riots. I felt like I had to start all over again, after years of coaching them. I was telling them to go home”, Mohamed says.

After the riots, Mohamed created a project to improve the relations between the youth, the police and the municipality.

To make sure it would never happen again

If youngsters feel like they have become a victim of ethnic profiling, Next Projecten helps them to file a complaint against the police officer or to find a lawyer. As Mohamed has come to recognize that without any formal complaints, no concrete measures can be taken by the police.

Mohamed tries to teach the youngsters that “they should not only consume, but they should rather be actively involved so that they can take ownership of what happens in their neighborhood”.

However, the youngsters that Mohamed works with are not only affected by their perception of ethnic profiling in the Schilderswijk but can also feel hurt by seemingly racist comments of Dutch politicians.

A recent example of such a statement about Islam from a Dutch politician can be taken from a promotional video of the Dutch national party the PVV. In this promotional video from 2018, Islam is associated with violence, anti-semitism, terror and misogyny.

“If politicians state that they have something against your ethnicity, you can either stay within your community or you can speak up. You can put your fist on the table and say that you are from the Hague, just like them; that you are also a Dutch citizen.” By encouraging youngsters to do the latter, Mohamed further bridges the gap between the youth from his neighborhood and the authorities.

An example of a youngster who has taken Mohamed’s advice to heart is a young man nicknamed ‘the director’. Like other youngsters that are coached by Next Projecten, he was a bit timid at first. Now he actually leads the talks of Next Projecten with the municipality. “I can just sit back and watch”, Mohamed says proudly. ‘The director’ currently is an active volunteer for Next Projecten next to his full-time job.

The face behind the work

When Mohamed went to youth centers when he was younger, he already felt like the type of empowerment he witnessed with ‘the director’ was integral to youth work. “All we did was play games all day, which was fun. However, I did feel like something was missing. I wanted to develop myself further.” So Mohamed took measures into his own hands, started coaching youth and eventually turned it into a business.

When Mohamed was 17, he was about to get kicked out of school. “I remember the principal saying that he was sure we would make it in life, all of us, just not if we would continue down this path.” This advice became a turning point in Mohamed’s life, after which he started to change his bad behavior. He is glad to now be able to pass on the same message to youngsters from the Schilderswijk.

Now that Mohamed has incorporated personal development into youth work in the Schilderswijk, he is often thanked by the youngsters.

Thank you for coaching me teacher Mohamed. I have a house and I am married now, things are going well with me.

However, Mohamed does not want to take all the credit. “It is a collective endeavor”, he says.

Shadows of the past

Nonethelesss, engaging in dialogue with the police is not always as easy as it seems according to Dean Arma (28), a student who works for NextProjecten. Next to studying social work at the Hague University of Applied Sciences, Dean also performs as a spoken-word artist.

Dean finds it difficult to have a positive attitude towards the police, due to his personal experiences. He admits that he has been involved with drugs and weapons in the past and that he has therefore often been in contact with the police. Based on these experiences, Dean feels hesitant about the effectiveness of dialogue with the police of the Hague.

Dean Arma’s vision on dialogue with the police

The other side of the story

Mohammed el Arrag, a superintendent of the police in the center district of the Hague, specialized in culture and connection, holds a different view than Dean Arma. According to Mohammed, the police of the Hague actively tries to move forward and seeks to learn from past mistakes.  

An important way through which the police now tries to improve the relationship between the police and the inhabitants of the Schilderswijk is through a project called the ‘Culturele Wasstraat’. Before police officers start working in the neighborhood, they receive a 2-month long training that introduces them to the diversity of the Schilderswijk. During this time, police officers talk to key figures in the neighborhood, visit locations such as prayer rooms, schools and shisha lounges and receive workshops about the different cultures that exist within the Schilderswijk. Mohammed describes this period as being an ‘integration phase’ for the police officers.

This is especially important because the Schilderswijk poses several specific challenges for police officers according to Mohammed. As the police needs to understand the many different cultural groups of the neighborhood, who may have different views of the police due to the situation in their country of origin. In addition, because of the neighborhood’s multi-cultural character, international affairs have an impact on the Schilderswijk.

When it rains in the Middle East, we can feel the raindrops all the way over here.

Furthermore, according to Mohammed, the riots surrounding the affair of Mitch Henriquez did not only show dissatisfaction with the police but they were also an example of cooperation between the police and inhabitants of the Schilderswijk. As worried inhabitants wearing yellow vests were actively involved with trying to calm the protesters to prevent the situation from escalating further. However, Mohammed explains that this is only the tip of the iceberg, as there are many more initiatives in the Schilderswijk led by inhabitants who love their neighborhood.

Mohammed thus feels proud of the efforts of the police to engage with inhabitants of the Schilderswijk.

I think we are an example for other neighborhoods.

Just like Mohammed el Arrag of the police, Mohamed el Khadir of NextProjecten is positive about the future. Mohamed el Khadir lives and breathes positivity and resilience, exactly what he is trying to teach youngsters. When asked, he can’t think of an instance when he felt helpless or powerless. He names his faith in Islam as being a key factor in his outlook on life.

“In the end, you can accomplish more if you work together”, Mohamed says.


Sun: bringing joy to the city of The Hague

Walking down the streets of The Hague, you have probably heard Sun playing in the streets before. You will hear him before you see him since his voice fills up the whole street. Although he stands with just his guitar and sings mostly old songs from the 1960s and 70s, he lights up the mood of everybody around, like his name promises. Getting to know him, he reveals that he has gone through struggles before becoming a street musician, but has found solace in it.

Sun playing in the streets of The Hague

Sun is a street musician from The Hague, claiming to be the „oldest and longest playing”. Before playing on the streets he was a music teacher, owned a music store, and even worked as a musical therapist. A hard time in his life made him dramatically change everything, and switch to playing on the streets as a street performer. Although he liked his prior job he was “fed up standing in the service of other people”; he wanted to live his life completely for himself.

“I reached the point that I couldn’t do it anymore, it became too much for me“

Adapting to his new life was not easy. He had lost everything including his income, insurance, and house to name a few. Going from having a lot of certainties in his life to none at all was a challenge. At first, he wasn’t always welcome, he was robbed and had confrontations with others. After being robbed and not getting defeated by it, but working on it, the message spread on the street: “You better not rob that stupid motherfucking Chinese guy because he will come after you. And that is the truth: I will come after you”. Looking back at his journey he feels acomplished, like he succeeded in making his own life for himself.

Getting help from the organization Kessler stichting and paying off debt helped him feel like a member of society again and not like he was “stranded somewhere on the line of life”. Reiki, a form of meditation and (as he explains it) healing yourself and others by “harnessing the powers of the universe”, has helped him a lot in that time.

Sun about how Reiki helped him getting his life back together.

Playing music in the streets is not always nice. When talking to Sun he speaks of the injustice in the city. He is running three lawsuits at the moment. At our meeting he hands me a stack of papers, stapled together and in a clear case, but heavy and noticeably gone through over and over again. There are certain laws for public places that for example forbid playing with an amplifier in certain areas, but Sun felt treated unequal by the police sometimes. When he was getting started he was more rebellious, getting fined by the police, but standing his ground and knowing his rights, but nonetheless feeling like other musicians got favoured over him.

Listen to him describing an unusual incident with the police.

He is aware that going to court won’t change what already happened, but he is searching for a permanent solution. Despite the confrontations with the police he also feels respected by them. He says he earned the respect because he just kept going, showing up and giving the best he could. The policemen can relate that it is hard to be on the street in all weather conditions and with the crime that is happening. He earned respect by not acting up when he was confronted with racism and staying “good for himself” and being a gentleman and a person who tries to create love for other people. He has made himself known by playing with good quality and performance. Not only on the streets, but also at weddings, parties, and even funerals, which he says is the biggest honour. Most people fear playing in front of a big audience, but he says he loves it, it makes him feel good, wanted, successful, and happy that people can feel his music. Playing music for a living is hard, but Reiki again helps him with relaxing afterwards.

Reiki always came up again in the conversation I had with Sun. His dream job would be a combination of Reiki and music and he sees being a Reiki master as an “old age insurance” when he can physically not play on the streets anymore. Reiki was with him before he became a street musician and he is certain that his Reiki and personality has saved him from getting angry at the police. Reiki not only calms him in confrontations, but in the vision of Reiki everybody is connected, which is why when he stands on the streets alone he feels like everybody is his friends.

It happens that those “friends” also pay him. He says the thing is to have joy from your music and be happy with your music. Earning enough money is not something he worries about because he knows the audience will see how happy he is. He is convinced that “if you meet somebody on the streets and you just feel what they want you to feel, you will grab your wallet”.

The next time you are in The Hague and the voice of Sun reaches you, just tell him that you are happy because you have heard his music and you will make his day.

Sun`s business card.

Guide me, Maestro!

A person waves his arms around in front of an orchestra. He stops his movements. He looks into the score, he gives directions to a specific group of musicians. The orchestra plays the passage again, the conductor waves his arms. He has to direct the musicians on how to play the music. How fast, how slow, how loud, and so on. Trouble is, many good musicians have their own ideas about how to play the piece. They are not easily convinced by what conductors have to say.

Conducting us is like swimming in a pond with piranhas.”

Götz Teusch, former member of the Berliner Philharmoniker.

This story is about how conductors successfully communicate their vision of music to an orchestra and navigate around getting bitten by piranhas.

Except for those who practice it, few people know about the murky, yet electrifying communications that go on during an orchestral performance. They can tell us how communication can work in a world that is increasingly less able to communicate at all.

The Body Language of Conducting

Now, let’s have a look at the basics of this process. Sophie Lücke, principle double bass at the prestigious Gärtnerplatztheater Munich, takes us behind the scenes of conducting.

The conductor can also ask for significant corrections for specific groups to play quieter. This can look different from conductor to conductor: From very explicit gestures to a simple lowering of the hand.
Photos: Sächsische Staatskapelle Dresden, Berliner Philharmonie

The open hand and expression suggests an invitation for more animation in the interpretation. “You can’t plan a performance. That’s the beauty of it. Everything is up for change, even on the night,” says Lücke.
Different conductors express this differently…

Photos: Lucerne Festival, Stephan Rabold.

Focussing on particular instrument groups “happens during every performance. When that group has a solo or the melody, the conductor has to be more attentive to them,” says Lücke. This can look very different with different conductors.
Photo: Roman Zach-Kiesling, Monika Rittershaus

The remarkable music is transmitted through these kinds of gestures. But who has the right to transmit what? What is the power dynamic between conductor and musicians? Sophie Lücke has a clear opinion: She believes that “while the conductor is central to all goings on, we musicians also have a right contribute. Most conductors value our input, and that is important. Bear in mind, there is an overall positive atmosphere that we have to create here. That doesn’t work if the conductor decides everything.”

Nicolas Mansfield, artistic director of the Netherlands Reisopera, offers a different opinion. Mansfield insists that “in most cases, the conductor is the instigator. In the end, he is also the one who stands responsible for the interpretation of the music. Towards the public and the critics, it is him who has to answer. That way, he has more responsibility to bear and has to have a certain authority in his communications.”

What looks like a black-and-white issue between democratic and authoritarian approaches is actually much more complicated. Conducting has undergone significant changes in the last 20 years. In the 1900s, there were still conductors like Herbert von Karajan and Arturo Toscanini, who ruled with a tyrannical approach. They were known for shouting at their orchestras and authoritarian behaviour at the rostrum. Karajan once said: “I have the power, and I will turn the screws until everyone bows down before me.” 

But here too, a second look yields an unexpected picture. Sophie Lücke explains that, while conductors today are generally less authoritarian, the musicians had freedoms in the past too, and were not as controlled as the atmosphere would suggest: “Old colleagues of mine at the Berlin Philharmonic [Lücke played there as an Academy member for two seasons] told me that Karajan may have been authoritarian in negotiations and rehearsals, but under no one could you play as freely on the night as under Karajan.”
There are many possible paths towards great music. This episode shows that even in this unexplored channel of communication, there is immense diversity and individuality.

The example of conductors giving feedback to the orchestra shows this individuality. Conductors have different ways of doing this. Giving Feedback to the orchestra is vital, it can be both positive and negative, but it is a vital communication process. “Good music needs honest and open feedback,” says Sophie Lücke.

Photos (clockwise): Sächsische Staatskapelle Dresden, Roman Zach-Kiesling, Monika Rittershaus.

Musicians as Individuals –
“We blow our souls into this”

Looking at her French horn, Sarah Willis (3rd horn at the Berlin Philharmonic) says: “We blow our souls into this.” This reveals another paradox in orchestral music-making: The tone that comes out of one’s instrument is only an individual product.

It’s the conductor’s job to make choices, binding all individual forces into one coherent whole and building a coherent interpretation of the piece at hand. These choices can look and sound very different, from conductor to conductor.

Conductors are just as individualistic as musicians, they too have their specific views of a piece. Listen to these two sound files of two different conductors (Russian Kirill Petrenko and German Christian Thielemann) conducting the same piece (the Prelude to Wagner’s opera Die Meistersinger von Nürnberg) with the Bavarian State Orchestra and Vienna State Opera Orchestras respectively:

The difference between the two interpretations is staggering. Petrenko uses a much brighter, in-your-face sound, with a greater emphasis on the brass. Thielemann uses the brass too, but looks for a round, mellow and overall darker colour pallet in the orchestra. Among many other differences, the tempi are wildly different: Petrenko takes eight minutes and 34 seconds for the prelude, Thielemann goes on almost 90 seconds longer, nearing the 10-minute mark. The articulation of the woodwinds in the middle solo passage is much more elaborate and legato-style (bound, longer) with Thielemann compared to Petrenko’s shorter, marked staccato-style.

Now that the interpretation is formed, the tough task is to convince the orchestra that all musicians should commit their forces to following it.

At that moment, when an orchestra believes in a conductor, he can do whatever he wants with them.”

Werner Resel, former member of the Vienna Philharmonic Orchestra.


If you can’t convince me, then you can know as much about the music and conduct your marvellous technique backwards and forwards- your conducting will be bland. People aren’t following you.”

Alexandra Ionis, Mezzo Soprano, currently singing at the Staatsoper Unter den Linden, Berlin.

This marks a completely new dimension in the communication process. The convincing part can take ages, sometimes until the last concert, sometimes not even then. But when it does work, unforgettable music happens.

Creating that special moment.

What happens when the orchestra and all involved are convinced by the conductor’s work? We have looked at the basics, now we come to that special moment that happens when 100 people follow the music to form a single binding unit. When it all works and comes together, something magical happens.

Dear God, let me die now, I am as happy as I possibly can be.”

“Then we all pull at one end of the stick, regardless of what was before.”

Götz Teusch, former member of the Berliner Philharmoniker

A culmination of energy, a feeling of insane togetherness. Making it all worthwhile.
It can happen at specific moments in pieces. Or it can happen when an orchestra develops one ethos, one singular focus and goal throughout a performance. So it happened (for example) with Sir Simon Rattle and the Berlin Philharmonic, during a performance of Schumann’s second Symphony in 2012. I talked to Sarah Willis, horn player at the Berlin Philharmonic, about this experience. She tells me:

Leading? Following someone somewhere without question? Once again, that connects conducting to being an authoritarian profession. I asked Alexandra Ionis, a young opera singer, whether she agrees to this:

After an example of this communication process succeeding, watch this clip of what happens when things don’t go too well…

Watching a conductor is one of the most exciting vantage points for any concert. It gives a bird’s eye-view of how the communication process between an orchestra and a conductor works.

“I’m Happy to be a Junkie to the end of my Days,” says conductor Sir Simon Rattle, when he talks about his job. This article gives a glimpse into that great mystery of communication and its extraordinary results.


Angry women.

When was the last time you were angry … and you showed it?

Most likely, women need to think a bit harder about that one than men. Although both men and women get angry about as much as the other, women tend to bottle it up a lot more than men do. That is because we are taught differently about emotions when growing up. “Boys learn to disguise their hurt and vulnerability as anger — girls, all too often, learn the opposite,” says Laurie Penny, a feminist journalist and activist from the UK.

Kids grow up learning that showing certain emotions is not ‘manly’ or ‘feminine’ enough. Emotions are gendered and we can see that when little boys for example are castigated for crying. They are told to ‘man up’ which usually means to show no weakness. In a New York Times article, the journalist Andrew Reiner describes a video that was shown in his course on masculinity. The video shows a young baby boy getting his first vaccination and while he is crying, his dad tells him to say ‘I’m a man’. ‘Don’t cry’ he says to him. Because weakness is reserved for girls. When girls on the other hand show that they are dissatisfied with something, adults either do not take them seriously or tell them to calm down, to be more quiet.

What this essentially means is to be less visible, to take up less space. While men learn to always be tough and strong and loud, women grow up to learn how to ask for help, how to be dependent and how to cry. Ilse, a 49 years old flight attendant, says that she thinks that this is just how it is and always has been. However, studies show that parents comfort their girls more when they are crying whereas they show less understanding for their little boys when they are sad. Boys on the other hand are allowed and even encouraged to be wild, to be over the line even. “Boys will be boys” is a phrase everyone probably has encountered at some point in their lives and has led to playing down sexual violence for example. Peter, a 70 year old dutch man, says that men did not emancipate and because of that they are less expressive and think less about the consequences of their actions than women.

Is there a difference between men and women expressing their anger?

But even if parents want boys to be more expressive, they are talking to them differently than to girls, says Harriet Tenenbaum, a developmental psychologist at the University of Surrey, England. She says that parents talk to their girls more about emotions with a wider range of words whereas with boys, they most often only talk about anger and negative feelings, if at all.

It is a cycle really when anger is associated with men. Anger is tightly linked with power, whereas sadness, the negative emotion usually expected of women when expressing unhappiness with a situation, is seen as dismissive. When men are asserting that power and showing their anger, they are seen as stronger and in charge. We can observe this in the professional world when looking at the gender gap in education and high-ranking jobs. Although boys score lower in high school and college, they make up significantly more percent of high-ranking jobs later in life. But while this system in the end works out for a lot of men, women have learned to comply to it, to work with it and to function in it. Both of these situations are problems one could get mad about.

Can you recall the last time someone was angry with you?

We have a right to be angry, no matter what gender we identify with.

But yet another study shows that even if women were to show anger our angry faces might not be recognised as such. Multiple experiments have revealed that “an angry woman’s face is one of the most difficult for people to parse” whereas an androgynous face looking angry was read as a man’s face by most of the participants of the studies, writes Soraya Chemaly, author of Rage Becomes Her, a book that looks at the intersection of anger and gender in depth. 

It is no wonder though that we are not trained in recognising an angry woman’s face. Up until recently, there was barely any footage of women being angry in movies. Lorraine Ali writes in the LA Times that “For years, television shied away from any depiction of female anger that wasn’t victim’s rage or simple hysteria.” Women in movies and tv-shows were simply not portrayed as being angry and justifiably so. We influence culture and culture influences us and when we are not used to seeing what angry women look like, we will likely not recognise it when they actually are.

It is important that we start taking a good look at angry women when we get a chance to. To look anger in the face. We have a right to be angry, no matter what gender we identify with. For anger is not only a normal emotion part of human life but also can contribute to a happier life.

This is what angry women look like.

It is scientifically proven that people living out a wider range of emotions are happier. This range is called ‘emotional diversity’ or ‘emodiversity’ and has emerged in recent scientific circles in order to investigate and understand the role of emotions on our health.

Emodiversity is a theory that compares the body to an ecosystem. It draws inspiration from biodiversity and its benefits and detects that though there are differences regarding certain markers of humans, overall we stay balanced the more emotions we feel in a day – just like in an ecosystem where every species has its own role and together they create for a more balanced system, says Jordi Quoidback, a psychology professor at Pompeu Fabra University in Barcelona who was the lead author of the study with more than 37,000 participants from all ranges of backgrounds.

However, it has not yet been investigated what causes what, merely that there exists a correlation. Future investigations, Quoidbach et al. in their article note, have to look at the long-term effects of living out a wide range of emotions. What they are sure of though is that emodiversity causes for better mental and physical health. In these studies, it did not matter whether the felt emotions are positive, negative or both.

Is it better to release the anger or to keep it in?

Anger is a feeling. Hatred is an action.

Laurie Penny

Oftentimes, anger is related to violence and violent actions. When I ask Flora, a 21 years old German student, whether she thinks anger should be expressed she immediately links anger to knocking over trash cans and boxing against walls. She says she tries to distract herself from her anger which resonated with what Ilse expressed as well, doing meditation or other activities that let her forget her anger. In their opinion, anger is not a useful emotion.

This binary system deeming negative emotions like sadness, fear or anger as inherently ‘bad’ and positive emotions like joy or gratitude as inherently ‘good’ is “overdue for retirement,” writes Jane Gruber, Assistant Professor of Psychology at the University of Colorado. She writes that “negative emotions” are essential in our mental health and gives three different examples of why that is. Looking at it from an evolutionary perspective, she states that “negative emotions” help us recognise dangerous situations ranging from an accident to an unhealthy relationship. Second, she writes that “negative emotions” help sharpen our focus by facilitating critical thinking and memory.  The third example of good impacts of so-called “negative emotions” is that the suppression of them does not make us happier. On the contrary, it leads to more distress and can result in substance abuse or overeating for example. Moreover, the suppression does not make the anger dissolve.

Anger can be useful. It can keep you moving and working when you want to give up.

Laurie Penny

Lior, one of the girls that are part of the photography project, uses her anger to create spoken word poetry. In one poem where she describes why she identifies as a feminist, she writes

Because I have had to learn
In excruciating ways
that we were handed different tools
must obey different rules
that boys will be boys
that you were given a choice
while we are constantly deprived of ours

Gruber also gives examples of “positive emotions” not causing greater happiness but the contrary. She writes that only feeling “positive emotions” and trying to maximise them constantly can lead to more self-focused behaviour which can relate to greater stereotyping of out-group members for example. Moreover, she writes that studies show that “positive emotions” can be associated with greater risk-taking behaviour and higher mortality rates. With this, she gives room to reconsider the duality of emotions existing these days and writes that “there is no intrinsic goodness or badness of an emotion”. Instead, we might try feeling all the emotions and letting them exist by for example voicing them. 

How do you deal with your anger?

One way to voice that specific emotion is swearing. Profanity is an emotional language and tightly linked to anger. We swear when bumping a toe on the table leg or missing a train. But while usually dismissed and enjoying a bad reputation, a study recently found that swearing might in fact make you stronger. Richard Stephens, a psychologist at Keele University, UK, showed that participants swearing while holding their hand in an ice bucket could hold out longer. He thinks swearing might be a means of pain management and even empowerment. And even though swearing is tightly linked with anger, there have yet to be found significant differences between genders when swearing. 

This might be a good way to start accepting our emotions and giving them space instead of pushing them down. And even though swearing has a bad reputation among some, it liberates your feelings, especially anger and frustration. Did you ever feel released when swearing after something annoying or bad happened? That liberating feeling of release is what lets your heart rate stay sane.


Ride Like Hell

In the 2012 movie Premium Rush a bike delivery driver races through the noisy streets of New York. The movie poster advertised the action-packed story that includes corrupt police and human traffickers with the slogan Ride Like Hell. Walking through a big city today, one can find something similar: Food delivery drivers working for one of the large food delivery companies such as Deliveroo and Uber Eats.

These riders are obviously not criminals like Ride like Hell’s protagonist. But as The Times reported in 2016, the slogan Ride Like Hell may just be as fitting. Back then, UK Deliveroo riders received criticism for having dangerous driving styles and unsafe bikes. But why are they all in a hurry? And why are they allowed to work with unsafe equipment?

The rushing-by turquoise boxes have become a common sight in cities today
A Changing Business Model

When it was founded six years ago, Deliveroo established itself as a student-friendly employer. They offer flexible work hours that can ideally be determined by the riders themselves. The first few years, riders received hourly wages, and extras for completed deliveries.

More recently, Deliveroo riders have a down on their employer. But ‘employer’ might not even be the proper term. Deliveroo gradually cuts contract workers and instead employs freelancers. In the Netherlands this began in 2017.  The new system forces riders to buy and manage their own equipment, to pay insurance for themselves, and to manage their paperwork. Furthermore, riders are having a harder time to collectively voice complaints or fight for better wages.

The freelancer system leaves riders on their own. Does it lead to more freedom or more exploitation?

This year, a Dutch court ruled that Deliveroo’s ‘freelancers’ are to be considered employees. Deliveroo wants to appeal against the ruling, so as of now, the freelancer system is still intact. Riders have to pay for all their work-related expenses, get paid per completed delivery, and are in competition with other riders.

Listen: A rider shares a friend’s story

This competition comes from the fact that riders with a good work statistic are more likely to receive the working shifts they choose. This incentivizes riders to do as many deliveries in as little time as possible. Ride Like Hell comes back to mind.

Problems in Practice

The stress put on riders through the freelancer system is visible. Last year, the AD reported on a snackbar in The Hague that stopped working with Deliveroo. The restaurant complained that the riders were rude to workers and customers as they were only thinking in terms of “time is money”. Riders had repeatedly quit the restaurant when finding out that they had to wait a few minutes for an order to be completed. It was left to the snackbar to find a replacement for the riders, and to get the food to the customer.

Listen: A snackbar worker recounts her bad experiences with riders

The riders’ behaviour makes sense given the pay-per-delivery system. In their efforts to make as many deliveries as possible, riders strategically adapt their behaviour. This is most visible in city centres, or areas with many restaurants. Riders gather here as they are most likely to receive new deliveries, being closer to the restaurants.

The changed behaviour of riders has created ‘grey areas’: zones where few restaurants are, and where for that reason few riders go. The above mentioned snackbar is among the disadvantaged, being located in one such area. This and the issues with riders were reasons enough for the owner to quit the service altogether. Nowadays they work with a dutch contractor who does their food deliveries.


The Invisible Illness…

Chronic Fatigue Syndrome (CFS)

Understood through a sufferer and her mother.

For the purpose of privacy, the interviewees wish to keep anonymous and therefore their names have been changed.

Being an active hockey player, book lover and a dedicated student, Freya’s life completely changed when she became bed-ridden. She knew something was not quite right when the headache intensified and the tiredness took over her every day life.

Freya is now 22 years old, committed to studying at university and back on track to a ‘normal life’ despite the struggles experienced for numerous years. Her experiences with Chronic Fatigue Syndrome still continue to this day, yet the symptoms have subdued and she’s no longer bed-ridden. Some of the most prominent symptoms she continues to face are extreme tiredness, vulnerability to viruses, dizziness and migraines. Every day is different, some days she can’t get out of bed, other days she can. Due to this, she also has a reduced course load at university.

Freya was diagnosed with Chronic Fatigue Syndrome in 2009. Chronic Fatigue Syndrome (also referred to as Myalgic Encephalomyelitis) is an illness characterized by a wide range of symptoms. These can include muscle and joint pain, sleep abnormalities, increased vulnerability to the flu and viruses, severe headaches, cognitive dysfunction through brain fogs and impact on short-term memory. The most commonly felt symptom is the extreme fatigue; experienced not only post-exercise, but on a daily basis. The symptoms can range from mild to an extreme-bed-ridden state or worst case scenario, death. F

The severity of the illness varies per person and has the ability to change over time. Some may have the illness for less than a year, whereas others for a lifetime. There is no cure, the cause of the illness remains unknown and limited research is being conducted due to a lack of awareness and funding.

According to Fred Friedberg the president of the Chronic Fatigue Syndrome / Myalgic Encephalomyelitis International Association, Chronic Fatigue impacts millions of people around the world.

Yet, often people have never heard of Chronic Fatigue Syndrome before. This means that sufferers often feel like their illness is invisible to outsiders.

What does the daily life of a sufferer look like?

Line of pills.

To combat a range of symptoms, different supplements including vitamins and/or medicine become normal to take on a daily basis.

Light sensitivity.

Exposure to light, which could be as simple as opening the curtain to sunlight, can create or intensify headaches. This means that often rooms need to be kept dark.

Breakfast and supplements served in bed on a tray.

A Chronic Fatigue sufferer may be incapable of participating in daily activities such as sitting at the table to have meals.

Brain Fog.

Cognitive dysfunction can play itself out in the form of a ‘brain fog’. This is a period of time where thoughts go cloudy or memory is altered altogether. This can be especially difficult for students.

Sitting in a shower to avoid fainting.

Standing for prolonged periods of time can cause for light headedness and cause the sufferer to faint. Excessive periods of time spent in bed also causes for muscle weakness, making standing difficult at times.

Freya explains:

How does it impact Freya?


Freya was lucky enough to have a group of friends who supported her, but it came with difficulties.

“Friends can think, you don’t want to hang out with me? No, its just that my body can’t handle this”

Family dynamics:

Freya’s parents were enormously supportive and made compromises to ensure the best circumstances for their daughter. Her father kept working whilst her mother became a full time carer.

“My mum couldn’t work and had the pressure to find out what was really going on.”

“My dad, he’s a real ‘take care of my family kind of guy’, so it was hard on him not to be able to do anything”

A Mother’s Perspective

Nicole explains how the impact of Chronic Fatigue Syndrome spills over to the rest of the family in a variety of ways. Nicole was unable to pursue work as she became a full-time carer for Freya, meanwhile her husband had to keep working.

When Freya was bedridden, unable to eat or drink and could barely talk, they had a period of around ten months where they barely saw anybody. Nicole explained that “people around you don’t understand what’s going on… they just stay away.” This took a toll on Nicole’s social life and ability to do simple things with friends, such as grab a coffee. Nicole explained that “trying to organise a babysitter for a seventeen-year-old [wasn’t] exactly the easiest thing to do.” 

If she were to be with friends, she would often place her phone on the table to be on call 24/7, just in case something were to spontaneously happen. Nicole mentioned that one friend would sometimes just come by with a home cooked meal and would just sit and listen, she said this helped a lot.

 “People around you don’t understand what’s going on …

…they tend to just stay away”

At first, doctors told her that she may have post-viral fatigue, explaining “it’s like a cold, it will go away again”. Freya’s diagnosis came after six months of constant tiredness including a range of other things too, such as headache, a cold, flu-like symptoms and muscle and joint pain all over. However, symptoms continued to escalate, the headache never left and the fatigue became more extreme. Nicole began to realize the enormity of the problem once the doctor officially diagnosed Freya with Chronic Fatigue Syndrome.

Her family doctor didn’t know how to treat her, so he sent her to a family paediatrician. The paediatrician looked at her lymph nodes, her thyroids and her blood levels, but didn’t know where to go further from there. Nicole explains that it was like witnessing someone end up in a “waste basket of cases, where you only end up in if the doctors don’t know what to do with you anymore.”

“[CFS is like a] waste basket of cases,

… where you only end up in if the doctors don’t know what to do with you anymore.”

The second paediatrician was specialized in Chronic Fatigue Syndrome, well known and located in one of the biggest hospitals of the state.  Whilst he was specialized in Chronic Fatigue, he took a simple approach to treating it through medication. A new type of medication was prescribed for every new symptom that would arise . This led to multiple different types of medications, leading to new side effects and little results. He concluded that it must’ve just been in her head as there was no other answer.

Is it psychological?

Nicole explains that a lot of the doctors simply told Freya it was depression, but seeing all the other symptoms, she just knew it went further than a mental illness. She explained that Freya was always willing to get out of her situation and whilst she did experience mental difficulties, it was simply unjust to label her situation as one it was not.

Nicole explains that one of the biggest misconceptions is that Chronic Fatigue sufferers are claimed to “put themselves in that position”. In a process of searching for answers, this was both dismissive and extremely damaging to not only the sufferer but the family as well.

Nicole was told by the paediatrician at some point that it was her own fault as a mother. With tears in her eyes, Nicole explained how painful it is to feel like you’re the culprit of your daughters illness. Not being able to give your daughter the answers she was after, was immensely difficult on the both of them.

This required Nicole to begin her own research, to look into alternative treatment and to dig deeper into the cause of the illness. Freya’s symptoms came directly after a HPV immunisation. However, considering the controversy surrounding vaccine side effects, doctors were hesitant to look into that as a reason.

Freya is not alone in her experiences of not being taken seriously. Chronic Fatigue patients often report not receiving the adequate treatment once they are diagnosed. A recent study conducted in the Georgetown University Medical Center, looked into the perceptions of Chronic Fatigue Syndrome in the Emergency Department, finding that two thirds of respondents reported that they wouldn’t go to an Emergency Department due to previous bad experiences or believing they wouldn’t be taken seriously. A high proportion of the 282 participants who took part in research conducted on Chronic Fatigue reported that they would often be told “its all in your head.”

They would often be told…

it’s all in your head

– Georgetown university study

Confirmed by Scientists and Medical Professionals

Whilst still limited, there has been more research conducted on the physical symptoms of the illness since Freya’s diagnosis. To name a few, according to the ME/CFS Research Summary by​ ​Jamie​ ​Seltzer, errors in cellular production, slowed metabolism, gut bacteria, changes in brain matter and a different gene function post-exercise have all been scientifically proven to be a result of Chronic Fatigue Syndrome. The search for a bacteria or virus that cause the illness has been unsuccessful. There are many theories, yet the direct causal link remains unknown.

How can you help?

Nicole particularly emphasizes the importance of bystanders in helping someone deal with Chronic Fatigue Syndrome. Spending all day in bed often gets lonely, therefore a sufferer often feels socially isolated. She stresses that it’s important for people to avoid judging and to “read about it and ask questions, just ask the person”.

When Freya was at school, kids would often tell her that they would be tired as well when they woke up in the morning, or they would question why she could sometimes show up at a party for less than an hour and not at school that day. The most important part of is to keep inviting someone to parties or social gatherings, this helps them feel less alone.

It’s extremely helpful to be open minded when they can’t make it or when they tell you today’s a bad day. The thought that they are not alone already closes a large gap between non-sufferers and sufferers.

“It’s extremely helpful to be open minded when they can’t make it or when they tell you today’s a bad day.”

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