Demystifying Multiple Sclerosis
To give you an idea of what the book is about, we refer to the foreword:I have spent hundreds of hours informing a great number of people who were freshly diagnosed with multiple sclerosis. At the beginning I found these conversations difficult and tried to avoid them whenever I could. It was only gradually that I became aware of how immensely important the initial impression of the illness is for the patient. It will influence them over a long period and determine whether they see themselves as being helplessly at the mercy of an atrocious disaster, or rather understand the disease as a threat which has to be faced, but which can be managed.
I thus began to take these initial consultations very seriously – yet in spite of my increased efforts my patients became even more depressed. Only later did I realise why: I myself didn’t like this disease. I viewed it as cruel and unpredictable and felt helpless to do anything about it. All this was of course expressed, intended or not, in my tone of voice, gestures and body language. It as paradoxical: the more understanding and kind I was when I spoke, the more my own despair was transferred to the patients, giving them the feeling that there was absolutely no hope for them.
When I finally realised that my own view of MS was at fault, I could begin to treat my patients differently. Over the course of time I noticed that most of them did not in fact end up in a wheelchair, and that the greater majority were getting along quite well with their illness. As this had nothing to do with my therapy – for I didn’t have any – there had to be a different reason. I searched for a long time, and when I finally discovered it, the explanation turned out to be quite simple and obvious: Unnoticed by many, multiple sclerosis has changed its appearance over the last decades. Although still described in textbooks and the media as an insidious disease with relentless progression, leading sooner or later to wheelchair dependency, this no longer reflects the latest scientific findings. Why this once dreaded disease has lost a lot of its horror is the theme of this booklet.