Between Cherry Blossoms and Temples: Japan (and Seoul) in a Wheelchair
It was a trip I had dreamed of for a long time: going to Japan and seeing the cherry blossoms in spring. Our honeymoon was the perfect opportunity for this,…
Hamburg, city of water, bricks and…wheelchairs
After two failed attempts to travel to Paris by night train in recent years, I was a bit hesitant to book another night train trip – this time to Hamburg….
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….
Naples: A City of History and Cobblestones, in a Wheelchair
Naples brings to mind Pompeii and Mount Vesuvius, of course, but it’s also full of cultural and artistic treasures that I’d never had the chance to see. Travelling with my…
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….
10 questions to…Josef Fleischmann
Well built, with a bright smile on his face, you wWith his power wheelchair, Josef is occasionally pitied as if his life were very bad, or admired as if he…
Travelling in a wheelchair (2/2): Train or plane?
The day of departure has finally arrived. Let’s skip the description of the journey to the station or airport, which depending on the city and the accessibility of its public…
Travelling in a wheelchair (1/2): Planning your trip
Budapest. A Saturday in June. Two Hungarian ticket inspectors have already been trying for almost ten minutes to lower the platform on which I am stuck with my wheelchair in…
Breaching that invisible gap
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,…
10 questions to…Nicolas Ferré
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…
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…
10 questions to…Michael Zakall
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…
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…
Discussing with other patients
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…
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…
Top 5 sentences that do not make you happy when you have a chronic disease
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…
Accepting the looks of others
“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….
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…
Talking about your chronic disease: Yes, no, how?
Should you talk about it? And if so, how? These questions are not always easy and yet are constantly present, but differently depending on the visibility of your chronic disease…