I was diagnosed when I was almost 18 years but had been living with the symptoms ever since I was 15 years. After a lot of misdiagnosis from different doctors and after they ruled out any of the “known diseases” they advised that it might be stress from school or I was just simply lazy.
I remember by the time I was told to go for the test in November 2007 the machine was out of service, 3 or 4 months down the line The test was done. They finally put a name to my sleeping habits, ni ivyo, sikuwa na jifanya.
Anyway, I was done for EEG test that confirmed what I had.
Teachers thought I was lazy or rude because of the tendency of falling asleep.
I also experienced stigma from my family before I got diagnosed (since then it has stopped) I was nicknamed ‘droopy’ a cartoon character may be because of my sleepy-eyes & slurred speech before I fall asleep.
I receive all sorts of stigma whenever
- I fall asleep in public
- when in company of people who refuse to understand (because they always have a choice to learn more) what Narcolepsy is all about.
- I fall asleep when in public Vehicles
- At the salon when getting my hair done especially inside a drier
- On queues i.e. at the banks & supermarkets, during elections etc
How I cope
Spirituality & Christ-Esteem
God does not give us obstacles we cannot overcome
The one thing I always have at the back of my mind. God has always seen me through every situation I have ever been through i.e. from sleep attacks while walking by the roadside or on the road. Goals that I have attained in life. Most of all as I continue to discover who I am in Him.
Self-esteem & Awareness
From the moment it was discovered that it was I disorder I have and there is nothing humanly possible I can do to end it. Then I came to a conclusion that whatever I do when I’m awake is what I should make count. I am not not Narcolepsy it’s just a disorder that I have. It is very important and for a PLWN (Person/People Living with Narcolepsy) to build on their Self esteem/identity to get over the negative criticism that will always be there.