Psychosocial Impact of Narcolepsy

Abstract
Despite remarkable progress in our understanding of narcolepsy, the disease continues to cause the sufferer severe negative life effects. Before and after diagnosis, narcoleptics often experience unrelenting severe psychosocial stress. Child and adolescent narcoleptics report embarrassment, academic decline and feelings of loss of self-worth related to the symptoms of their disease. Personality characteristics may be adapted in order to avoid social situations that would precipitate cataplexy or draw attention to the patient's degree of somnolence. Misdiagnosis of these illnesses may result in inappropriate treatment and underestimation of an individual's potential. Adult narcoleptics also face the concerns of the workplace. Worry about loss of job and income are a source of anxiety and are often based in reality. Accidents at home, while driving and in the workplace are increased, creating safety concerns for both the patient and the community. Marital difficulties are common and psychopathology is known to occur more frequently. Narcolepsy's marked impact on quality of life has been found to be similar across cultural lines and these effects appear to be an inherent part of the disease. The socioeconomic impact in general is even more severe than those of comparable forms of epilepsy. Successful diagnosis and treatment do not end the narcoleptic's difficulties. The need for stimulants often creates problems with pharmacists and family. Somnolence, which responds the most poorly of all narcoleptic symptoms, leads to continued problems in the workplace. Side effects related to stimulant use may be a further source of difficulty. Finally, families may be unwilling to accept the illness and thereby alienate the patient. Education of the public, including physicians, pharmacists and family, will be necessary to improve this situation. Participation of informed professionals at the individual and group levels will be necessary to impart positive change in the narcoleptic's psychosocial well-being.