I recently had the pleasure of attending the Ursula Späth Foundation’s AMSEL award ceremony – a truly beautiful and emotional event. This year’s media award went to filmmaker Sabine Marina for her film “Little Grey Cloud”, in which the committed young woman processes her own MS diagnosis. The title comes from the fact that her doctor described the MS diagnosis with the words “There is a little grey cloud in your blue sky”.
This kind of diagnosis delivery has preoccupied me afterwards. Can one say it like that? Linguistically perhaps a nice formulation, but not really very accurate.
The announcement and clarification about the MS diagnosis is a profound experience for most people affected. And even if most patients say they were “in a fog” at the moment, the situation and the doctor’s choice of words remain etched in many people’s minds forever. A lot can go wrong in this moment as a doctor, but a lot can also go right. Therefore, explaining the diagnosis requires focus, especially on the right choice of words.
Unlike many other neurological diseases, MS can be treated nowadays – especially in the early stages, the disease can even be managed very well. Nevertheless, MS is more than a “little grey cloud”, as there is always the risk that the disease will change the affected person’s life in one way or another. And the diagnosis always brings with it a high level of uncertainty and fear of the future – enough to completely turn life upside down.
We doctors have a duty to alleviate these fears, show perspectives and direct a hopeful gaze towards the future. Therefore, it is right and important to put into perspective the image of MS – as it is often portrayed in the media and exists in the minds of many people. Therefore, I can understand the description of the “little grey cloud”, but in my opinion it does not do justice to the overall situation – and a “belittling” of the disease is not medically purposeful either.
We inform very early about the diagnosis today – often right after the first disease relapse if things go well. This means that we usually have to inform young and otherwise healthy people about the diagnosis of a chronic disease. Most of the time, they are not even acutely ill anymore – the symptoms of the relapse are often already improving or even completely gone. We are therefore not informing about an illness in the true sense, but about a “future risk” – although we can usually only roughly estimate the individual risk at this moment.
This is where the difficulty of clarification lies – how do I convincingly and understandably explain to someone that they are not acutely ill and should not become ill – but the neurological assessment has found that their life circumstances are threatened by the considerable disease risk of MS? In order to maintain health, consistent therapy is necessary, because the risk must be taken seriously. The announcement of this assessment and the associated recommendation for continuous therapy, however, disturb the feeling of health and promote the perception “I am sick” – and often a feeling of despair and hopelessness.
Good communication probably moves between “little grey cloud” and “heavy storm”, it must show ways and perspectives that do not trivialize, but also do not appear threatening. Ideally, good information strengthens the patient’s personal responsibility and leads to gaining information and interest in getting informed – and thus to an informed decision. Because quality of life and coping with illness depend to a large extent on self-determination – and for this we need to pave the way with realistic information.
