Every year for the past 3 years, Lyon Sud hospital has hosted a special Atopic Dermatitis day. This event, which is organised by the Centre Expert Eczéma Auvergne-Rhône-Alpes and the Association Française de l’Eczéma, offers patients and healthcare professionals the opportunity to get together and discuss and learn about the disease from a global point of view. One of the talks was about the psychosocial and emotional consequences of the disease, an aspect that was hugely verified by all the personal accounts that were posted on the Association Française de l’Eczéma’s website, when it conducted a survey into the impact the disease has on the lives of adults.
Having to live with itchy skin is hard enough as it is, without having to put up with the sweeping comments of a society steeped in value judgements and prejudice, as in: but it isn’t that bad, stop scratching, and anyway it’s all in your head!
Let’s start with a patient’s daily life, starting with the ordeal of looking in the mirror every morning. “So what do I look like today, then?” Because adult atopic dermatitis tends to affect areas that are constantly exposed to the ambient air, i.e. the hands and face. Every morning, patients have to deal with a different face, something that cannot fail to affect their mood. Then they have to get dressed: what’s the weather like today? Trousers, underwear, beanies – all types of clothes can rub and itch the skin – not to mention the effect of fabric quality. And they have to go out, be seen by others – and that’s if the issue hasn’t already been raised at home with the inaudible sentence “just stop scratching will you!” This command shows the family’s utter refusal to accept the facts - as if anyone would find it easy to stop scratching when they’d just been bitten by 1000 mosquitoes! Patients who play sports find that sweating will probably make them itch, if they feel like having sex, sweating will make them itch, if they fancy an alcoholic drink, it will probably make them itch too, if they feel like… in fact adults with atopic dermatitis give up quite a lot of things, either to try and stop the itching or because they don’t want people to look at them.
Because the very worst thing patients have to deal with is other people’s judgements and preconceived ideas. Until such time as information about the disease is more widely available, atopic patients will always be subject to mental dictatorships like “it’s all in the mind”, “you should cut out milk” and, above all, “cortisone is dangerous”. So it’s quite understandable that they hope to obtain comfort, if not a solution, from the people who are in a position to treat them, i.e. healthcare professionals.
And even then, it’s not unusual to hear pharmacists and doctors say things that don’t particularly help. So insecurity is a permanent feature of the life of any atopic patient. All such patients suffer constantly from feelings of loneliness and being misunderstood, as well as a great lack of self-confidence. They suffer dreadfully, and their hugely damaged self-esteem does not necessarily recover when the condition of their skin improves. Even if the skin looks as though it is getting better, the person concerned still feels fragile inside and any little stressful situation is liable to lead to a flare-up. When this happens, the connection between stress and an episode of atopic dermatitis is obvious, visible even, and unfortunately this only serves to strengthen the opinions of people who say that “it’s all in the mind”. Something that isn’t so easy to see, however, is the prison inside which atopic patients have to live their lives: eczema has made them vulnerable, and society’s negative view of them makes them more vulnerable still. It’s a fully functioning vicious circle…taking them down to rock bottom. Where does the answer lie? In a global treatment that takes account of all the patients’ suffering – both visible and invisible –, of all the preconceived ideas, bias, and value judgements that have hurt them so badly, and of how the patients themselves interpret their skin problems. The only way to seal the contract of trust that our patients so badly need, and which will in turn ensure that they stick to their treatment, is to really listen to them and let them see that we empathise with them. Let me use the following metaphor: you can’t open a door if the hinges are completely rusted; and you can’t make a patient feel safe and secure if you don’t deal first of all with what has made them so vulnerable. This approach, known as the educational approach, is an aspect of the professional activity of therapeutic education practised here at the hospital, and the only response that can restore a patient’s trust and confidence, regardless of the power of the molecules used to treat the surface of the skin.
Mots clefs : psycho-social and emotional consequences of the eczema