Young people with chronic illnesses want to raise awareness about their daily reality

In Belgium, one in ten young people aged between 18 and 35 lives with a chronic or serious illness. While they dream of studying, working or enjoying their social lives to the full, these young people regularly encounter various obstacles within society, particularly administrative ones. To draw attention to their needs, Haute Ecole PXL and Esperity conducted a study of 800 young people to better understand this issue, the impact of which on daily life is often underestimated.  

According to Sciensano, chronic diseases are ‘conditions that persist over time, do not heal spontaneously and rarely heal completely’. The public health institute estimates that they account for ‘90% of the social burden of disease in Belgium, particularly due to functional limitations, but they are also responsible for a significant proportion of deaths’.  

These diseases include diabetes, cardiovascular and respiratory diseases, and cancer. Manon suffers from regular severe migraines: ‘This means I can’t stand noise or light. I often feel nauseous,’ she explains. This has an impact on her daily life: ‘If I have a bad attack, I can’t cook or go shopping. I have to ask my partner for a lot more help.’ 

This mental pressure is a reality for many patients, as Dr Jolien Robijns, a researcher at PXL Zorginnovatie, explains: ‘A chronic illness doesn’t just affect physical health. Young people’s mental well-being, social life and future prospects are also deeply affected.’ 

‘A chronic illness doesn’t just affect physical health.’  

Dr Jolien Robijns, researcher at PXL Zorginnovatie 

Working is also complicated: ‘My migraines cause a lot of fatigue and stress, which can lead to time off work, as has already happened,’ she admits. ‘It also requires adjustments to my schedule. I work in a hospital and some shift combinations are simply not compatible with my health.’ 

This impact on professional life is often an additional difficulty for these patients to deal with, as Magali Mertens, Coach and Disability Manager specialising in return to work, explains: ‘Patients with chronic illnesses can sometimes feel ashamed of feeling tired or experiencing a decline in their cognitive abilities. They wonder whether it is their own fault or the impact of the illness.’ This feeling of being a fraud is widely shared by Manon: ‘Psychologically, telling myself that my health insurance was paying half my salary was difficult to accept because I wasn’t brought up that way and I felt I wasn’t entitled to it. Except that it’s not my fault.’ 

Magali Mertens advocates for more communication between employees and employers: ‘The key is to make reasonable adjustments. Health is a private matter, but a boss needs to be able to say, “The door is open, we’re here to support you, what do you need?”’ she explains.  

Administrative simplification  

‘There is real work to be done at the societal level when it comes to administrative procedures,’ says Manon, who is particularly passionate about the subject: “It’s honestly an obstacle course, bordering on Kafkaesque in its difficulty. We are faced with administrative delays, errors… I fought with my health insurance company for months. This causes a lot of frustration, but also anger, annoyance and fatigue.” 

This survey, commissioned by the FPS Social Security, should enable the authorities to see where improvements are needed, as Peter Samyn, President of the FPS Social Security, explains: “Young people living with a serious chronic illness are less able to study and/or work, which severely limits their participation in daily life and has a significant impact on their financial situation. We intend to use the recommendations of this study to improve social protection for these young people.‘  

This lack of recognition is often difficult for patients to deal with, as Magali Mertens explains: ‘Chronically ill people have a disability that is experienced but not recognised,’ she explains. “This is a real societal challenge. We can’t pretend it doesn’t exist. Tomorrow’s generation, and even today’s, still has a lot to offer… Yet today we talk about active and non-active profiles. There’s nothing in between.”  

Opening up the conversation 

‘I would like chronically ill people to dare to talk about it more, because it’s true that many of us hide it or don’t talk about it,’ says Manon. ‘It’s important because we don’t always realise the impact that a chronic illness has on people’s lives. Sometimes you just have to try not to judge.’ 

Magali Mertens shares this view: ‘Opening up is very complicated. We need to allow people to speak freely, so that it’s not taboo or shameful, but just a fact, so that we can support them as best we can. That’s the best way to make their journey easier,’ she concludes.