I Have Narcolepsy

The video I chose from the true life series was “I Have Narcolepsy”, where we were brought in to the lives of two women who were diagnosed with narcolepsy and had bouts of cataplexy. Julie was sixteen and recently diagnosed whereas Katy was twenty two and had been living with the illness for years now. The episode was set up like a quest narrative: both were on a journey to find ways to manage the disease and both were trying to improve themselves and not have there lives completely taken over by the disease. At the end of the episode, Julie even submitted herself to a study that aimed to better understand the disease. The purpose of this narrative was to give the audience a glimpse in to the lives of people that the general population perhaps doesn’t completely understand. In the video, they should friends and family being supportive, but not entirely understanding what the afflicted were going through.

The lack of understanding only brought about only stigma that I could identify, and that was laziness. Especially in Katy’s case, Robbie, her boyfriend, expressed frusteration when he attempted to get her off her medication and suggested she was somewhat abusing her condition in order to get away with being lazy. Though eventually he came to recogize how much her disease influenced her activity, I feel this association with laziness and narcolepsy could be made quite often. However, sense we are a biomedically influenced culture, overall there was not much negativity directed towards these women because of their illness.

What was interesting in Julie’s case was she was recently diagnosed and had to start seeing medical professionals to deal with the disease. She was against medication but the doctor provided a scan to show the abnormal REM cycle she had and urged her to medicate to manage the illness. He took her illness seriously and was very helpful.

Julie’s recent diagnosis was also interesting because we were able to see her work through the stages of her sick role. When her cataplexy had gotten worse, she really started to notice the danger of her illness and realized the strong presence of her illness. That acknowledgement drove her to seek medical attention, even though she disliked the idea of medicating. At the doctor visit, he confirmed her illness severity and informed her of all the responsibilites and activities she would have to give up: driving, swimmng without supervision and even taking a bath.

Illness narratives are useful in that they bring information to people like doctors, friends, etc. to help them understand what is going on. As mentioned in lecture, mental illness or illnesses where the individual does not appear ill are judged because people do not understand what they can’t see. This leads to shame to discuss these problems, especially in women, who feel judged and questioned about the validity of their illness (Werner, 2004). By using narratives, people can begin to understand what it is like to have these mysterious conditions and begin to create a healthy environment for the afflicted to get better and not feel shamed.

This Post Has 1 Comment

  1. Amy Sweetapple says:

    The clip I found on youtube was about a 36 year old woman, Nicole, whose professional golfing career was jeopardized by her Narcolepsy. At first when she went to the doctors to seek advice about her odd sleeping spells, they all turned her away and told her that it was because of her crazy lifestyle. One day she was playing in a golf tournament and she hit a good shot and was excited which caused her to be unable to move; this is a stage of narcolepsy called cataplexy. Automatic activity also occurs in people with narcolepsy: one does not remember doing normal, routine activities. Finally, she was prescribed medicines to improve alertness that is a stimulant for cell groups in the brain to keep one awake, but not really correcting the underlying issue of narcolepsy because it is currently not well understood. A combination of therapies allow Nicole to keep her narcolepsy under control. She no longer is falling asleep while driving or playing golf. She has also learned how to pay attention to her body and knows what helps her stay awake and keep alert. Even though narcolepsy is quite unpredictable, Nicole expressed a restitution narrative. She is maintaining her condition and sees positive results by taking medications and other therapies. Being that Nicole is a professional golfer and very active, she was not perceived as the stigma of just being “lazy” as speculated in the True Life episode for the younger girls with narcolepsy. Overall, it seemed as though Nicole had a positive experience with doctors (after she was diagnosed correctly) and her illness experience was not negatively affected by some of our culture’s ideas about narcolepsy.

    Youtube. “Narcolepsy.” Accessed July 28, 2013. http://www.youtube.com/watch?v=GmXSJooA6T4

Leave a Reply