Invisible companions: (not) a disease like any other

Marie Kokiopoulos and Rachel Brixius have mental illnesses themselves. So they speak from experience. But both women not only want to help, they also want to educate. Because when thoughts lie, sharing and understanding can change lives. Alongside psychologist Fränz D'Onghia, they explain problems, challenges and solutions around mental well-being.

The young woman opposite beams from ear to ear: broad grin, loud laughter and good humour. In other words, it's not how one imagines people who have depression to be. Exactly this assumption is a problem, one of many, finds Marie Kokiopoulos. When life becomes a burden and the head is full of questions, there is little room for optimism and the endlessly preached "good vibes". The 26-year-old knows this from her own experience. She was diagnosed with depression when she was 17, and binge-eating disorder came on top of that.   

Mokuchsdag is a fictitious day meant to express that something will never happen. For some time now, the name also stoods for an online platform that was initiated by the Luxembourger last October. Because Marie Kokiopoulos wants something to happen. The goal is to play neither psychologist nor doctor. The launch of the platform was a kind of cry for help: "If I had heard someone talking about an eating disorder when I was 16, it would have helped me. I would have needed a platform like that back then". Mokuchsdag (on Instagram & Facebook) is meant to be a network that gathers and provides resources and referrals.

Their very personal stories 

For her, one aspect in particular is central: sufferers should tell their story. What they have done to get better. "Of course, every individual goes their own individual way, there is no universal miracle cure." Nevertheless, these experiences should encourage those affected. On the one hand to take the initiative themselves, on the other hand to give hope that things really can get better. "Instead of just talking about the fact that it needs to be talked about, can anyone please talk about it now?, " says Marie Kokiopoulos, who herself has dared to go public with her story.     

Rachel Brixius holds the same view. A student in psychology and English studies, she had decided in April 2020 to take the biggest step for her personally – to make her story public. She was first diagnosed with borderline personality disorder at 16. Now 29, she is currently in therapy to manage her depression and anxiety. People who have gone through mental illness themselves should tell their stories, Rachel Brixius agrees.

"In addition, dialogue needs to be sought with people who are currently struggling with it. To show both sides of the coin." Because even if the individual experiences are encouraging, some might feel intimidated by success stories and think: "I'll never make it this far". 

Even still learning how to manage life with depression has not stopped Rachel Brixius from founding an online platform. Using illustrations and memes, LetzBeAware (on Instagram & Facebook) aims to make the different facets of mental illness more understandable. The positive aspect in particular becomes clear on the accounts.

The optimistic attitude of the founder is also evident during the Journal interview: She is a determined young woman who tackles a taboo subject with a lot of humour. She also promotes direct exchange with a private Facebook group. She is grateful for the trust placed in her and passes on her knowledge, but she also sets limits. When asked if she does educational work, the young woman laughs. She sees herself in this position and hopes that the process of coming to terms with it will bear fruit.

If you type the keywords "Depressioun, Binge-Eating-Stéierung, Alkoholismus, Anorexie, Drogenofhängegkeet, Schizophrenie, Angststéierung" into an online search engine, you will find few results in Luxembourgish. Multilingualism, so often an advantage, is becoming a barrier here, according to Marie Kokiopoulos.

Of course, the argument that even more people can be reached in English, German or French counts, but this should by no means exclude references in Luxembourgish. Besides the language barrier, this would lead to an identification blockade. 

Have Luxembourgers been forgotten? 

She denounces the lack of visibility of the most important contact points in Luxembourg: Internet sites, addresses, contacts to which those affected can turn when they need help. For Rachel Brixius, too, there is still a need to catch up here. "It is well-intentioned in a country like Luxembourg to benefit from linguistic diversity, but the Luxembourgers are forgotten in the process." It is alienating, as if mental illnesses were a foreign phenomenon, she says.    

Both women hope to fill these gaps. "I realize that I have hit a nerve. There were many people who were ready and just needed the final push, " says Marie Kokiopoulos. But she is also aware that this is not enough.   

Dr Fränz D'Onghia, Director of the Service information et prévention de la ligue, admits that the question of language is always a very complicated one. However, at the same time, he points out that trade-offs have to be made and decisions have to be taken. "What is the added value? If we did everything in Luxembourgish, we wouldn't have the visibility we have now." Internal analyses would support this: There are more people accessing the respective websites from abroad, they say, and online searches in French or German also predominate.

For "the girl from the internet, " as Marie Kokiopoulos titles herself, the Luxembourg government's Corona battle cry could not be more apt, even in the context of mental health: "We are all part of the solution, but we are also all part of the problem". She would like to see the discrepancy between mental and physical health disappear. Both should be discussed on the same level. Just as tips on doctors who have helped with upset stomachs are exchanged during small talk, the same should happen with recommendations on suitable psychologists.

Just as parents educate their children about common hereditary conditions, the same should be true for depression or alcohol problems. Rachel Brixius explains that sufferers need to realize that these are diseases like any other. "Or do you pick colds, flu or cancer on a whim?" she asks. 

The status of mental health in society is different for the Mokuchsdag founder than it was a few years ago. "10 years ago, the platform would have fallen on deaf ears, " and she wonders, "Is it maybe because of the coronavirus?" However, she is disturbed by the narrative that mental health problems only emerged because of the pandemic. The resilience of each individual was very much challenged by the extreme sanitary situation, but she says it is wrong to assume that everyone was in perfect health before the pandemic.   

She even dares to say that "it did a lot of good to a lot of people not to run through life at 10,000 kilometers per hour". Rachel Brixius also believes that mental illness did not wait for the next pandemic. Coronavirus and depression clearly have something in common: Both lead to isolation, which is anything but good for humans as social beings.

Fears emanating from the virus are sometimes even worse than the virus itself, she explains further. People are looking for stability and routine to structure their daily lives. Many people find this desire in alcohol, develop sleeping disorders or other facets of depression. The young woman believes that people are definitely on the right path, but as is often the case, Luxembourg is a little slower. 

A disease that lies

"Maybe it's because we as a nation are too proud to admit that there are such problems in our little country?" This contrasts with a recent study by the German Robert Koch Institute, which concluded that people in Luxembourg had the highest incidence of depression in a direct EU comparison.

Rachel Brixius admits to having been too proud to admit her illness for a long time. What's more, depression makes you think that you deserve it. The face of LetzBeAware says that sufferers need to realize "that thoughts and feelings are not facts, but a direct result of this illness that lies to you so much".

For Fränz D'Onghia, it is quite clear: every crisis has collateral damage, "we don't know when, but the numbers will go up". At the same time, the corresponding hotlines have never been used as little as during the first lockdown. The psychologist regrets that these were discontinued early – probably also because of the meager response – and explains: "Most people don't need a psychologist until the situation has calmed down".

With the pandemic, the issue of mental health has seen resurgence. However, he fears that mental health will be forgotten again after the crisis. For him, it has been "parent pauvre" of health policy for years. For him, there is a fundamental difference in the appreciation of physical and mental illness. What both women have addressed from purely subjective perception and through testimonials from those affected is confirmed by the psychologist: "There is a real difference between women and men".

Outdated gender roles lead to men finding it harder to open up, which in turn can be attributed to social culture: How was the person brought up? In what line of work is he or she active? What kind of people does he surround himself with? If the different areas are traditional male domains, the likelihood of men opening up emotionally, let alone seeking professional help, is very low.   

It is a social problem that mental illness is seen as a weakness and does not fit into the world view of seemingly traditional masculinity, the "strong sex, " says Rachel Brixius. And this in turn leads Fränz D'Onghia to another problem. "Every year, experts redefine what depression is."

In therapies and meetings, the characteristics mentioned by those affected, i.e. mostly women, are recorded. Thus, there is a greater knowledge about depression in women. Accordingly, the psychologist questions whether the tools used to treat illnesses do justice to the treatment of depression in men. 

Other vulnerable groups are senior citizens, according to the psychologist. "It's sort of accepted that in old age you're tired, you don't move much and you eat less – these are actually symptoms of depression that are not necessarily part of old age and in the worst case lead to suicide, " he says. Suicidal thoughts in most cases result from previous depression, as the Ligue Luxembourgeoise d’Hygiène Mentale ASBL explains on its website.

Figures on suicide attempts less precise

“In 2018, 58 suicides were counted in Luxembourg, ” he further explains. Among those are cases in which the intention cannot be clearly clarified, i.e. whether a person made a mistake in the dosage of the medication, for example. The expert in the field deals primarily with suicide prevention and has coordinated the corresponding action plan since 2012. 

In contrast, the figures on suicide attempts are less precise; here, only extrapolations or statistics from abroad can be used as a guide. The situation is similar for depression. From surveys, one could deduce that about 7 percent of people have a depression per year.

For anxiety disorders, the second largest group of mental illnesses, it is 14 to 15 percent. More men are affected by addiction disorders and suicides and more women by suicide attempts, depression and anxiety disorders, according to the psychologist.  

Another problem is the reimbursement of treatment. This is only covered financially if it is carried out by a psychiatrist. But because there are many more psychotherapists and psychologists than psychiatrists, but the former are largely excluded from reimbursement, the balance is disturbed. Demand is greater than the existing supply and waiting times for an appointment of the affordable option are long.

Psychotherapists could relieve psychiatrists and stop the rush. More professionals could absorb more patients. "Investments would finally have to be increased, treatment and prevention improved, " says the expert.  

This is also the view of the personalities behind LetzBeAware and Mokuchsdag. Until that time comes, however, both women want to continue to make a strong case and do their part to bring mental health further to the fore and make mental health problems more visible. With all the hurdles that exist, they say, one should never underestimate what the story of a single experience can do. As Marie Kokiopoulos explains with a grin, "I talked to a smartphone camera and since then 15 people have already been to a psychologist".