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 period of time gave me an idea of what the disease meant on a daily basis and what daily life with the disease could be like. What I could and could not do. What was realistic and what was not. Reading testimonies on forums or talking to other chronically ill people has always been a great help, as it allowed me to collect experiences, tips and insights, and thus to make the experience of my own disease easier.
I remember a patient who had the same chronic disease as me and with whom I shared a room in hospital. I had only been sick for six or seven months. She explained to me that she was not feeling very well, so she was in hospital for her bi-monthly plasmapheresis treatment. Her “not very well” already seemed to me to be a perfectly acceptable level of fitness since, although she could no longer work, she was able to look after her house and her daughter. This, while ten steps seemed almost insurmountable to me, had seemed quite extraordinary. It gave me hope: Even though her physical condition still seemed out of reach, seeing someone in good physical shape with the same disease as me cheered me up. It was possible!
Talking to other chronically sick people, who don’t necessarily have the same chronic disease, has always interested me a lot in understanding what implications it has for them, how they live with it, what it has changed in their lives. There is a kind of comfort in sharing with others who are in a similar situation because we have the impression that they understand us. The people close to us, the people who accompany us, may be present during the highs and lows of the disease, but they have not experienced the reality of the disease and all that it implies.
Of course, each experience of a chronic disease is unique, as the disease occurs in people who have had different prior experiences and also manifests itself differently. The age at which the disease occurs also has an impact on the way people feel and experience it. People do not experience their disease in the same way at the age of 15, 40 or 70, as they are not at the same stage of life.
Despite this, there are common themes in each journey: pain, suffering, relationships with others, etc. Understanding how others have overcome these difficult passages has enriched me and helped me to move forward. There is a form of community in the disease. I have never participated in meeting groups, firstly because my disease is very rare, but also because I would have felt a bit like going to Alcoholics Anonymous or, as in the film Confession of a Shopaholic, a circle of shopaholics. I always liked the spontaneous discussions because they were not planned and were thus more open because they were not forced.
Discussing with other patients is thus a source of information about the specific disease as well as about the more general reality of the disease. And you, have you had the opportunity to exchange with other chronically sick people? Did it help you?