Christine Pitzen, the German Society for Narcolepsy, writes an article that talks about the best strategies to combat a disease that disables the life of patients.
If you ask narcoleptics about the most severe impacts that the disease has on their lives, mainly the following reasons are mentioned:
Regarding problems in learning and working, the daily sleepiness, less attention and concentration ability lead to less performance at school or at work and very often the patients experience virtually no understanding from teachers, colleagues and supervisors. Depending on the stage of narcolepsy, the patients are not able to graduate at school or to get a job; most likely there is a high risk of unemployment.
The quality of life is very often impacted by narcolepsy as well. Again, the main factors are the sleepiness, less vitality and even very often a change in the personal behavior in all situations of daily life. The quality of life very much relates to having or losing a job, not being able to follow personal interests such as special hobbies and even the social environment with good friends who support or do not support a narcoleptic person.
Scientists and physicians have researched in this direction as well; several studies – here very generally mentioned – lead to the following interesting results:
- Cognition is probably not impacted by narcolepsy itself.
- No significant differences in cognition tests of narcopleptics and healthy control groups, but narcoleptics show more often less attendance and concentration over certain time. In several daily situations the healthy control group also performed better.
- Overall the main driver which leads to described findings is the excessive daily sleepiness.
- Difference between subjective perception and objective measured health related quality of life (HRQoL).
- Relation found between stage of disease and personal situation.
- Correlation between subjective perception of HRQoL and depression.
The last point is a major topic where I personally would like to focus on.
In general it is difficult to compare all individual narcoleptic destinies, as the disease appears in very different stages. The ability of each patient to manage its narcolepsy in daily life depends very much on the individual physical and psychological condition and here I agree that a stable social environment and e.g. having a job are very important factors for each person´s mental health. But this is not the only one: from my personal experience it is very important to learn to accept having narcolepsy, as fighting the disease will sooner or later lead to surrender. Despite the individual situation of a narcoleptic patient such as school, kind of work and finally the stage of the disease, I consider that the personal will to develop necessary changes in one´s life is one of the most important preconditions to finding the best coping strategy. Each narcoleptic has to learn how to allocate its resources most effectively: learning while awake (during night time if necessary), work in home office (depending on the job), get possibility to sleep at work / in school, etc.
I know several patients who recognize a deterioration of their narcolepsy whereas their personal perception of life quality is even better in comparison to the onset of the disease. They were able to adapt their destiny and really tried to find their “best day”, either at work, at home or together with friends.
Here the patients need to get more support from physicians, social workers or psychologists. In order to provide the best treatment, additional studies need to be done to be able to close the gap between subjective perception and objective measured HRQoL. Based on that, early interventions are possible in case of recognized deterioration of mental health, as well as the enrichment of the diagnosis regarding the risk of depressions. From a patients perspective therefore a better ambulant treating is required: once a narcoleptic patient finally gets its diagnosis, very often he falls into a gap, as no follow-up treatment is provided. Therefore especially the setup of regular open sessions with physicians and self-help groups in order to accompany the patients in the first time after diagnosis. In this context I very often recognize that family members (parents of narcoleptic children, partners), friends and sometimes even colleagues also suffer from the new situation in their lives, from their part a dedicated coaching or support in any direction is very much requested. And, unfortunately, today still very often underestimated. At the end all measures taken have to lead to a multiple support in developing individual coping strategies. From my personal experience I may confirm that even if my narcolepsy is getting worse, today my HRQoL is much better than some years ago. I learned to manage this disease and I am still going on. If I am able to do my things not with 100% anymore but with 80%, it is still more than 50%, and this is something I would never miss.
German Nacolepsy Society