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…
Well built, with a bright smile on his face, you would never think when you meet him that Nicolas has been living for several years with epilepsy, a disease which he has learnt to cope with over the years, despite the more difficult phases. A very enlightening interview! 1) Who are you and what is…
Twelve years that my life has changed dramatically, for the worse, but also for the better. Twelve years of chronic disease, with ups and downs, with more or less (but almost never no) symptoms. I certainly would not have chosen to be in this situation, if I had been given the choice. But, twelve years…
Before I became ill, I had always found myself to be quite patient, whether it was waiting for a bus or a result or any other situation where I had to wait. But the illness made me realise how impatient I actually was. Impatient for things to happen at the pace I wanted, the way…
In a phone call with a friend a few weeks ago, when we were discussing my health, I explained to her that my chronic disease has become part of my daily life and routine, and that it does not need much ‘maintenance’ after all. Indeed, I have learned to cope with its ups and downs,…
Tall and slim, a sunny smile, charged with positive energy, these were my first impressions of Michael Zakall when I first meet him. But the trained actor has been suffering from a chronic bowel disease since 2015, which has turned all his projects upside down and made him find a new way for himself. Very…
In a chronic disease, there are also phases when, fortunately, things get better, when the disease is hardly felt at all, or at least not too much. After several months or even years of ups and downs, the disease finally stabilizes at a satisfactory level. Although the symptoms have not disappeared completely, they remain contained…
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…
There is a time before the diagnosis and a time after. Sometimes it will have taken months or years of searching, trial and error, and uncertainty to get there. Although it is not always easy to accept it, receiving a diagnosis is a pivotal moment in the relationship and the journey with the disease. The…
Even if the hospital is not an obligatory moment for all chronic diseases, it is often part of the equation when one falls ill, if only at the beginning to make a diagnosis. In my mind, the hospital is associated with smells, the smell of disinfectant and cleaning products, tastes, the taste of undrinkable tea…
Whether I could work, how, how many hours, under what conditions, was a big concern for me in the early years of my studies. Just before I became sick, I saw the next few years as already completely mapped out: study, then start working. Quite natural at 15-16 years old. When the illness came on,…
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…
The week comes to an end. I take a moment to settle down, reread the week, take note of how things are going and see what I had planned, what I did or didn’t do, what I would have liked to do. In the phases when I am not doing so well, there are often…
Optimism, realism, cynicism, terms that no doubt seem quite contradictory and yet often coexist in a chronic disease. Cynicism as an undoubtedly logical and inevitable consequence of the disease. Realism as a confrontation with the reality of the disease. Optimism as a choice, difficult of course, but indispensable – I think – to continue to…