Multiple sclerosis is the commonest neurological disease affecting young adults. In patients under 30, treatment needs to be adjusted accordingly.
This is also the time when the importance of good lifestyle and eating habits have to be emphasised: of practising a sport or exercising under the supervision of a physiotherapist, or reducing and preferably giving up the consumption of tobacco, cannabis or alcohol.
We encourage them to rely on a trusted adult, a family member or person from their immediate circle, to provide the necessary support. Quite frequently, we also need to deal with the parents’ anxiety even more than with the patient’s actual suffering, taking into account their level of education, cultural practices and the language barriers which may constitute an obstacle to the “rational” approach to the disease as we conceive of it. Some young patients prefer to come alone as they do not wish their family or friends to know and are ashamed of being ill. They are anxious not to worry their parents, who in their opinion would not understand the situation. As for more personal issues such as planning a pregnancy or the formation of an intimate relationship, they may require one-on-one consultations.
Our working principle is to set appointments (check-ups, examinations, imaging, etc.) in agreement with the patients and according to their availability.
Once they are feeling better, young patients want to suspend their treatment. Holidays often play a part in this, sometimes due to the atmosphere of insouciance they generate or because the patients wish to hide from their families that they are taking medication and are ill. In the event of a relapse, they tend to impulsively go to the emergency department, which may lead to hospitalisation in an atmosphere of anxiety or panic.
It is important to be aware that young patients can be unpredictable: we need to spend more time with them and make ourselves more available to them, to ultimately ensure that we see them less often – or are able to deal with emergencies such as “I’ve lost the bag I keep my drugs in” or “I’ve lost the prescriptions”. We need to encourage them to keep up their studies, issue medical certificates wisely, understand the patients’ situation without enabling them to use their disease as an excuse for dropping out, and generally act the part of a referee.
It is up to us to be there at such times, without taking over for them, but in order to help them become full partners managing their disease.
When healthcare staff adapt their approach to the requirements of young patients, the result is frequently a genuine, reliable and trusting relationship. After all, MS forces young people to mature earlier and adapt, compromise and negotiate with themselves and other people the way adults do, in the awareness that the road they initially planned to take will have its obstacles and pitfalls. It is up to us to be there at such times, without taking over for them, but in order to help them become full partners managing of their disease.
Mrs Christa Expeel, MS Nurse
Dr Bernard Dachy, Head of Neurology Department
CHU Brugmann, Brussels