Question 5

5.) How has being diagnosed with narcolepsy helped or harmed your life? Do you feel a sense of relief or terror in knowing with more certainty that you have narcolepsy? How have others responded to your diagnosis? Are they supportive, or do they retain their doubts and still think it must be something else (for example, depression, etc.)? How has your diagnosis affected your work life? Is your employer supportive and flexible with you? If they are, provide the specific details of what they allow you to do. If they aren’t, tell me why you think they aren’t.

Being diagnosed with narcolepsy has been nothing but a blessing in my life. It has allowed me to make sense of my world finally. Having so many symptoms of something all at once and not knowing what is going on is sheer Hell. It has also helped me set realistic limits and goals in my life that I would have otherwise not known where impossible for me to attain. Unfortunately that also means that I do have to accept certain conditions in my life that I can't change but that knowledge is far better than then the consequences of not knowing.

I can say that I have definitely found relief in knowing that I certainly have narcolepsy. The consequences of the devastating symptoms of narcolepsy in my own life allow me to say that without any reservation. I think the most devastating consequence of having narcolepsy has been the lifetime, for me, of not knowing that I have a significant and very serious neurological disorder. And, how that lack of knowledge led me to misinterpret my many common symptoms of narcolepsy for other things which I could not ever abate with any success leading me to live a very unsuccessful and extremely psychologically tortured life.

I have had, unfortunately, a very poor response from the medical community here in Vancouver, British Columbia, Canada and the UBC Sleep Disorders Clinic has been completely unsupportive of me attaining a successful diagnosis or any diagnosis nor any effective treatment. The lack of medical services, diagnosis and professionalism has taken a very negative toll on my life. I am now in the process of having to head to the United States of America where I have no medical coverage to receive, finally, what I believe is appropriate treatment for a patient who may have narcolepsy. On the other hand most people respond with sympathy. Though there are times when they cannot understand the severity of the symptoms and assume there may be another way to deal with the EDS. I find it best to explain that it is a physical neurological disorder and that the symptoms are not psychological nor can they be treated by psychological means.

Since I am already on a disability pension for a mis-diagnosis the diagnosis of narcolepsy which I expect to receive from another medical establishment down south comes as no surprise to me. I had already lost my job to EDS