Question 3

3.) How has narcolepsy affected your personal life? How did people perceive you before you knew you had narcolepsy? What sorts of general personality types were attributed to you that you found offensive (examples: “she's lazy”, or “he must have had a wild night last night,” or “she's depressed”)? What sorts of challenges, if any, did you face in supposedly “normal” social situations in which you were expected to stay awake? Once again, any specific story relating to this would be fantastic.

Narcolepsy has devasted my life. I have no friends. No social life. No job. No career. And, without a proper diagnosis and treatment I have no hope for the future. I have been misdiagnosed so many times I now live on a disability pension alone in an apartment and sleep almost all day long. I never go out. I cannot exercise and I worry about developing diabetes. All of the things I have ever had I have lost and every single relationship I have ever had has been lost and now at the age of 37 I feel there is no more point to this unless I get some serious medical help.

Before I knew I had narcolepsy people perceived me as unreliable, weird, eccentric, crazy etc. and I was a social pariah and outcast. As a child people took advantage of me and physically molested me and took turns physically assaulting me as well. My lack of enthusiasm for sports led me to be bullied against which I had no defences and soon became known to be the town wimp which led me to be excessively ostracized, outcast, laughed at, picked on and assaulted. This destroyed my self confidence and my ability to relate to normal situations with any success. I used to live in fear of being dismissed as an abnormal human being every single time I tried to engage any new or even old friends in relationships or worse yet I feared being beaten. My childhood years remain a complete foggy haze to me and I still cannot bring myself to closure or confrontation with my old oppressors.

Generally it was assumed that I was a drug addict during high school. I often heard teachers talk about me that I must be stoned all of the time because of my behaviour. I was of course not high when they spook of me like this. As a child in elementary school I was always on the receiving end of punishment and the usual accusation that if I only tried harder I could do much better. In my later adult years people generally thought I must have some sort of mental disorder and tended to treat me as such. Often times they would just leave me behind somewhere and I would inevitable be lost and hurt.

One of the biggest challenges I faced living with narcolepsy was and still is being able to make plans for the future and not sleeping in or being to tired to attend. But, the main challenge I think is being in a stupor. I have lost so many friends who cannot understand my behaviour because it is so loud, uncoordinated and generally unaware of the 'normal' context of socialization.

A specific example of this problem that has happened to me in nearly every single relationship that I have had is friends who call me to say they no longer want to be friends because I pose a significant risk to their other friendships which they value more highly than mine. Often times I cannot understand what they mean or if I can I cannot control the impulsive action that led to the dismissal of our relationship because at the time it is happening I am in a stupor.