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…
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…
Like everyone else, I don’t like days when I’m not well and bedridden by fatigue and the symptoms of my chronic disease. I know that it is inherent to a chronic illness to have phases when I am not feeling well. But it doesn’t make it any less painful. Because it’s not very pleasant to…
Have you recently been out shopping, even if you were exhausted from your chronic disease? Or have you gone to school or work, even though you were in pain and had many symptoms? Congratulations, you can be proud of yourself! I hope that when you went to bed in the evening, you looked back on…