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 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…
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…
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…
It’s morning. You wake up and for a moment you hope. What exactly? It’s not always clear. That the illness is over. That the pain is gone. That you are no longer tired. In any case, there is always some kind of disappointment when you realise that what you hoped for has not happened. This…
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…