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Living with Idiopathic Hypersomnia. Patient Perspective

I have wanted to shine a light on the different hardships and also the positive aspects of Idiopathic Hypersomnia disorder for quite some time now. It seems so very overwhelming like it’s too much important information to cover without important omissions I am sure to make. I intend to give this my best shot….

I was always a normal child. I never slept too much or too little compared to my peers until my senior year in High School when I began to go straight home after school and get in about a 3 or 4 hour nap before supper. Everyone, including myself, attributed it to the end of the school year. Busy body syndrome. I continued to nap every day in my first few years at college. I still had not gone to a physician yet. I assumed I must have been the laziest person alive. I made it through cytology school but not without lots and lots of naps and good time management skills. I didn’t go to parties or out at night very much. I certainly wasn’t living the life of a typical college student.

I got married in June of 1992 and it didn’t take long before I felt like I was just not good enough.

Like a loser. I would try and try and try but I just couldn’t seem to finish anything. I could feel the disgust directed toward me because I was well aware of my own opinion of myself which was not good at all. I was like most newly married working moms. I pushed myself to stay on top of everything.


I seemed to be in a whirlpool of work, including unpaid (off the clock OT) working weekends, trying to keep up with my children's sporting events, forced conversation with my (ex)husband while trying to keep some semblance of marriage going. The harder life got the more I seemed to struggle with my sleepiness. I slowly found myself sleeping more and more. I even started going to sleep as soon as I got home from work on a Friday and would only get up for water and restroom breaks until Monday morning rolled around. No exaggeration whatsoever.


I was falling asleep at work while sitting and looking into my microscope. I would fall asleep while driving. I would doze off at stoplights. I was falling asleep at totally inappropriate times and I was very concerned about where I was heading.

Would I ever be able to live normally again? Not knowing exactly what the problem was and having no hope for a fix made my life feel almost not worth it. I became seriously depressed and I started having major cognitive difficulties. I mainly had trouble with trying to come up with common words that should be obvious to anyone. Also, my memory suffered terribly. I went from being a pretty good employee to one who was in trouble constantly for not being able to clock in on time. I was late at least 2-3 times a week. Waking up was so difficult for me. I had at least 5 different alarm clocks set at different intervals and my mother called me every single morning to wake me up. I tried to trudge along and do the best I could because I just assumed that everyone felt the same way I did. I was a mom with two young kids, a demanding full time job, a husband, and the usual motherly duties.

Didn’t all women in my situation feel the same way?

Unfortunately, my husband had had enough of my "laziness" and filed for divorce less than a week before I was scheduled to have my sleep study (PSG/MSLT) which later revealed that no, not all women in my situation felt the same way that I did. I wasn’t lazy. In fact, I had a neurological sleep/wake disorder that was responsible for me feeling the way I did.

Being diagnosed with Idiopathic Hypersomnia has changed me in so many ways. I’ve learnt to love myself again and appreciate the things I can do. I’m stronger now. I am a fighter, a survivor. I will never give up this fight. Thank you all for reading.

September 2015

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