Beyond the physical barriers that remain – even if they have been decreasing for several years already – there remains the invisible and sometimes insurmountable gap of preconceptions about disability, chronic disease and their limits. Several times, people have been surprised that I can travel alone, in a wheelchair. As if such a thing was…
My stays at the hospital or in a treatment centre have always been an opportunity to exchange with other chronically ill people and, through their experiences, to better understand what it means to live with a chronic disease. Getting to know your disease better Initially, talking to others who had been ill for a longer…
What other people tell us… Sometimes we want to laugh about it. Because it can be really funny. But sometimes we also want to cry when we hear it. Because it reminds us of the reality of the chronic disease. But sometimes also because, under the guise of helping us and minimising the difficulties of…
“You could leave your seat to me. Are you not ashamed of being seated.” Told me a woman in her sixties on the bus. “Actually, I’m ill, I can’t stand. “I replied with a semblance of a smile. My interlocutor sighed deeply and rolled her eyes. As if that would change anything. As if I…
Physically fit, good at school. That was me. Before the illness. At that time, I rarely asked for help, but rather I gave it to others, be it bw explaining a lesson not understood to someone, helping an old lady to get on the tram or giving her my seat in the metro, looking after…
Should you talk about it? And if so, how? These questions are not always easy and yet are constantly present, but differently depending on the visibility of your chronic disease and the place it takes in your life. But it is not because the disease is visible that it is easy to explain, especially when…