DIFFERENCES FROM OTHER CHRONIC CONDITIONS

• Public misconceptions. Seizures seen by lay people, in life or on screen, are often the frequent seizures of the severely learning disabled (reinforcing a stereotype), or psychogenic (reinforcing ideas of seizures provoked by emotion), or provoked by flashing lights (not common), or with associated aggression (rare).

• Low profile. People with epilepsy often under-achieve having missed education and career opportunities, making them poorly placed to advocate for better services. Those who could make a difference—for example, celebrities in the public eye—almost invariably conceal their condition.

• Intermittent disorder. Epilepsy is a background threat rather than an obvious disability with any stigma deriving more from concern about having seizures (felt stigma) than actually having them (enacted stigma).

• All ages. Epilepsy affects neonates to the elderly, and generally is long-term; its cumulative lifetime prevalence and morbidity is far greater than comparably prevalent adult-onset chronic neurological disorders such as stroke or multiple sclerosis.

• Many conditions. There are many causes and types of epilepsy and many more conditions that resemble epilepsy, so the diagnosis of “blackouts” requires a broad clinical perspective.

• No test. There is no one test for epilepsy, despite the public’s and many clinicians’ often misplaced faith in the EEG, and no test for seizure control (unlike diabetes and HbA1c).

• No “trial of treatment”. …