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,…
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,…
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…
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…
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…