Inclusion and disability at work: between real accessibility and invisible challenges
When you have a disability, working is a topic of its own. Beyond the question of whether you’ll be able to work, there’s the more pragmatic question of accessibility at…
When “I’m tired” is no longer enough: metaphors for fatigue in a chronic disease.
How can we talk about this invisible fatigue that can’t be seen but affects everything? Between spoon theory and battery theory, metaphors help express what words alone struggle to convey….
Managing a chronic disease: A full-time job?
If society occasionally, not often enough, acknowledges the additional workload women often shoulder at home, the silent, unseen workload of managing a chronic illness for anyone gets even less attention….
Top 6 things I’ve learned from twelve years of chronic disease
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…
Patience, always
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…
How a chronic disease becomes routine
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…
In the phases when things get better…
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…
Diagnosis, now what?
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…
Back to…the hospital
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…
Working with a chronic disease: Mission impossible?
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…
Learning to set priorities
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…
How to cope with a chronic disease? Cynicism, realism or optimism?
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…
When tiredness prevails…
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…
Accepting to receive the help you need
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…
15 activities for when you are not in good shape
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…
Celebrating the wins
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…