Living with a chronic disease at the time of the first revolts was not easy. “When the disease started in childhood, close relationships were forged between the young patient, parents and caregivers. But when it appears during adolescence, it is often more difficult to accept ”, explains Dr Paul Jacquin, specialist in adolescent medicine at the Robert-Debré hospital (Paris).
But whatever the case, a chronic disease always disrupts the aspirations of young people: autonomy, concern to look like friends, search for identity, sexualization … “Adolescents tend to hide their illness so that it does not prevent them from being ‘normal’, that is to say like the others”, explains the doctor. The risk ? That the teenager is treating himself poorly, if not at all.
Talk about his life with him
Parents are often clueless when it comes to communication and miss the “status quo” era of childhood. “It is important to support them in the idea that their child needs to emancipate himself and that their role is to trust him to make this empowerment possible”, underlines Dr Jacquin. Parent groups set up by support associations (see box) can help find the right distance.
Don’t cut yourself off from friends, it’s important
It is also necessary to open a dialogue with the adolescent about his illness and integrate it into his life plan. If certain trades will be prohibited for him, if fertility problems can arise in adulthood, it is necessary to talk about it. “Arranging meetings, without parents, between the young person and his doctor is essential so that he can address all the questions”, adds the specialist.
Friends also play a decisive role, at an age when a classmate is taken more as a role model than his father or mother. “What a teenager fears the most is the pity of others. To protect himself, he will tend to act as if nothing had happened. However, it is important that he talks about it to his boyfriends and girlfriends, that he says what he has, what it involves and possibly, that he does not wish to talk about it again. “
Joining a group of patients suffering from the same disease can be reassuring: “therapeutic education” sessions, even vacation stays organized by certain associations. But we must not reduce the teenager to his pathology. “Often, going on a school trip or a classic holiday camp is possible, provided that the supervisory staff is informed of the procedure to be followed in the event of an emergency”, insists Dr Jacquin. What matters is learning to enjoy life with the constraints of illness and treatment.
Support associations
• Help for young diabetics Info on daily life, stays …
• Asthma & allergies Online chat, therapeutic education programs, “Asthma schools” …
• Draw me a sheep : Focused on chronic transmissible diseases (children born HIV-positive …), the association welcomes and listens to 14-25 year olds.
• Beating cystic fibrosis : Live better with the disease.
• François-Aupetit Association: For Crohn’s disease …
• National Federation for Kidney Failure Info, organized trips …
