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"You have to give yourself a few injections and keep an eye on your levels, nothing else? That's fine." A statement that diabetics may have had to listen to several times, or one that you may have made yourself. "For many people, it is not like cancer. A cancer diagnosis causes real fear", Sylvie Paquet, director of the Maison du Diabète in Luxembourg, tells the Lëtzebuerger Journal. "But diabetes can also have serious consequences. Reactions like 'It's just diabetes, it could have been leukaemia' are wrong." The nutritionist has been studying the disease, its effects and progress for almost 40 years. A lot has happened in the last decades, "but raising awareness for the illness is not always easy, because it doesn't seem spectacular."

With its campaigns, the association always wants to put people who talk about their experiences first. The aim is to encourage other affected people and to educate the rest of the population as much as possible. Often, the former are people who are in the middle of their lives. "Outsiders listen to the testimonies and say: 'OK, so what's the problem?' This generates a certain image for people who know nothing about it. It conveys that everything is fine and diabetics live without any restrictions." However, life after diagnosis is a different one from before: "It is a big restriction. The spontaneity of everyday life disappears." June Mousel (11), Claudia Kollwelter (31) and Roger Behrend (72) are aware of this.

Everyday life restrictions

All three have type 1 diabetes, the form that does not occur due to lack of exercise or an unhealthy diet. It is an autoimmune disease that destroys the body's own insulin-producing cells. As a result, the body lacks insulin, a hormone that is responsible for regulating the metabolism. Insulin is necessary to properly process the important substances in our food. Put simply: Insulin is a kind of key that "unlocks" the cells so that the glucose that is supplied to us through food can be absorbed by the cells. For those who want an even simpler explanation: without insulin, a type 1 diabetic would starve to death, even though he or she consumes food. June, Claudia and Roger know that they can live a life like any other person. However, this life involves some limitations for the three diabetics. In front of the camera, they talk about their everyday life, which on the one hand is normal, but on the other hand always presents new challenges. They want to show that living with diabetes "is not as easy" as some would assume.

Type 1 diabetes can only be treated with insulin, which is the central difference to type 2. "It's a completely different disease", emphasises Dr Roger Wirion, a long-standing member of the Luxembourg Diabetics Association (Association Luxembourgeoise du Diabète, ALD) and an experienced diabetologist who has been retired since 2018. Although both types differ significantly from one another on this point, it is wrong to generalise which of the two is more consequential. "If a person becomes diabetic in their 20s, they are automatically affected for longer than someone who becomes ill in their 70s. Type 1 diabetes usually appears early, often in children and adolescents.

Recently, however, more and more people are developing Type 2 diabetes earlier on." The causes are easy to identify: "Lack of exercise and unhealthy food. It used to be called adult-onset diabetes because most people got it after the age of 50." For Sylvie Paquet, it is not the treatment that determines how bad it is. "Just because someone has to inject themselves particularly often doesn't automatically make their diabetes worse. You have to deal with the whole issue, and that's why type 1 diabetics take extra care of themselves. Because type 2 diabetes is often not detected immediately, you could say that these people are more likely to have complications."

The numbers now speak for themselves. 350 to 400 million people worldwide have type 2 diabetes. This means that it accounts for a good 90 percent of total diabetes cases – with type 1 being eight to ten percent – of all diagnosed cases. According to figures from the Ministry of Health, around 30,000 people in Luxembourg are affected by the condition. The tricky thing about type 2 is that the path to diagnosis can be very long. "Many people don't know that they are sick. Some don't feel any pain for years." With age, the disease progresses and the symptoms become so severe that the person in question eventually does notice them. Wirion stresses that in such cases it is all the more important to "check for possible complications as soon as the disease is discovered. The sooner, the faster something can still be done" and the possible damage can be limited. As always, prevention is better than reaction.

According to Paquet, type 2 diabetics in particular come to the Maison du Diabète. Many find it difficult to accept their condition. "Many people get angry and say: 'How can I accept something that I am not responsible for and that has been imposed on me?' Their lives are completely turned upside down. Some can accept this change better than others." She thinks that this other great unknown – the specific origin of the disease – can also be a problem. "Research has been very close to finding a cure several times. Time and again, however, this momentary joy has resulted in another defeat. This can be very frustrating for everyone concerned, although type 1 diabetics who were diagnosed years ago can certainly testify that a lot has happened since the discovery of insulin 100 years ago (the hormone was discovered in 1921, ed.)."

In Luxembourg, any costs related to diabetes are generally covered by the health insurance (CNS). "Of course, there are certain conditions to check that everything is in order and nothing is wasted. We are already very spoiled in that respect and the CNS is open for negotiations.", The availability of (new) technological tools such as pumps or sensors, for example are also dependant on the choices of big companies. "If the Luxembourg market seems too small to them, they may not grant authorisation." Thus, what can be done is not exclusively up to the CNS. In other parts of the world, a differentiated picture presents itself. "Insulin is a vital drug that is not accessible to everyone. In Luxembourg, we are not always aware of this, but in the US, many people can no longer get treatment. They can't afford it." Millions of people don't have access to the vital hormone. This is not only due to the broken American health care system: Some pharmaceutical companies make a lot of money from the diabetes business – a criticism also voiced by Claudia in front of the Lëtzebuerger Journal camera.

Discrimination

Another problem is discrimination against diabetics, which is also an issue in Luxembourg. Sylvie Paquet cites the world of work as an example. "Of course you can't say: 'We don't want you here as a diabetic because you are always sick'", but the reality is different, says Roger Wirion. "If there is a choice between a person with diabetes and one without, it is often clear which one is chosen." Diabetics are particularly careful, since they have to take extra care of themselves anyway. According to Paquet, this injustice has to be pointed out again and again. "This happens over and over again behind", adds Paquet. For various professions, there is still the assumption that a diabetic is not suitable for this work. "Of course there are areas where it can be dangerous, but with new technologies the situation has changed. Why shouldn't a type 1 diabetic be able to do this or that? It should rather be looked at how everyone can be integrated."

During the interview, Roger Wirion raises a point that has generally been causing headaches in Luxembourg for a long time: psychological care. He pleads for care to be financially reimbursed to a certain extent. "We always say that type 1 diabetics are able to lead a normal life, and that is true. It's still a restriction because a normal daily life is only possible if they take care of themselves more than others." When a person receives their diagnosis and realises what it means and all it entails, it can bring a great deal of psychological stress. "Psychological care for chronic illnesses is still a neglected issue. Something still needs to happen there." According to Wirion, one aspect has improved in particular. "This idea that diabetes is a shameful disease and those affected have to hide. In all the active years in the ALD, we can say that this has improved dramatically. Nowadays there is hardly anyone who hides it."