There are obvious reasons persons with E. have trust issues---the longer they have E., the more complex these issues seem to become. This may be the hardest part of living with E., overall. I find I am unwilling to trust others---this springs to mind as the hardest part of E. Let me explain: I trust my husband, because he has been by my side, seen my most terrible convulsions, cleaned me up afterward, and still loves me.
But, contrast this single extension of trust and confidence I willingly extend to my husband with my responses to others in my world, those who wear titles suggesting, by social convention, they should have my trust, and the world seems a little bleak for me because these titled folks frequently seem to fail my trust.
Doctors---I have seen many of them in my lifetime and I fail to see any advantage in giving any one of them my trust. Often, this is because they seem a little hazy, or downright ignorant, about my condition. Since I understand my condition well, they become resentful, even antagonistic during the treatment process. They question whether or not I really have E. in the first place, they develop reasons for running the same tests over and over again, then they cannot decipher the results of those tests, once they have them in their hands.
The general public: these are the ones who question whether or not I am retarded, whether or not I am criminal, whether or not I am contagious. Some suggest to me that my E. stems from past-life sins of a horrific nature, or that I might benefit from an excorcism to rid me of my condition.
Drugs, surgery, alternative methods all eventually reveal something dangerous to me about the ones who want me to use their methods. For example, I have been periodically informed that chiropractic can cure my epilepsy. Yes, a few good, bone-cracking sessions with these certified quacks and I will be right as rain. No thanks.
Have I just settled into my own, comfortable cynicism or is it experience that informs my attitudes?
I say it is experience. For example, when one prevails upon the medical establishment for help, then finds the individual doctor in his office, looking up Epilepsy in his reference books, one might feel let down, perhaps just a little.
Or---let's say one seizes in the presence of a nurse, and she tries to shove her wallet between my teeth? It is apalling to me how many folks still believe this to be proper first-aid for a seizing individual!
Trust is the hardest part of living with E.---or the lack of it!