I have Narcolepsy

I chose to watch the True Life episode that documented two young people with Narcolepsy and Cataplexy. In the episode, the two were diagnosed with Narcolepsy four months prior to the airing of the show, and is now starting to exhibit symptoms of Cataplexy. Narcolepsy is a chronic brain disorder that involves poor control of sleep-wake cycles. People with narcolepsy have extreme sleepiness at random times of the day that are uncontrollable and can occur at any time. Cataplexy is associated with Narcolepsy, and is a sudden episode of muscle weakness that is usually triggered by emotions like laughing, and crying.

The girl who was recently diagnosed with Narcolepsy initially had the restitution narrative, because she was recently diagnosed with the disorder and she saw it as a temporary state. This can be attributed to the fact that she was just recently diagnosed with the disorder and the effects of it have not completely been taken in by her. After she went to the doctor and it was confirmed that her condition would only get worse a make certain things more difficult in her life, her narrative changed to the chaos narrative. This narrative means that she sees the illness as a permanent state that will inevitably get worse, with no redeeming virtues.

The culture and stigma shown in this episode was actually somewhat shocking to me. To see that one of the girl’s boyfriends said that she had to work harder to get control of her disorder was really disheartening. There is a belief, at least for this disorder, that it can be controlled and conquered. That belief is misleading because, according to the episode, there is no cure to the disorder and it is hard to even manage. It shows that the stigma of Narcolepsy and Cataplexy about its severity and there is even a belief that it can be cured, even though it cannot at the moment. The medical professionals also seemed to be harsh toward one of the girls and there was even a sense of unsympathetic behavior from the doctor toward the girl’s disorder.

Sick roles were very important for both girls that were documented in this episode. The girl that was diagnosed with Narcolepsy 4 months ago used it to get a hold on what she needed to do to become stable with her disorder, whether it be receiving medication or pursuing an alternative method of treatment. The girl who has had the disorder for a long period of time used her sick role to balance the ill effects of over medicating and the potentially positive effects of being medicated. In general, the sick roles were very important for the girls in the show because it led to them to the realization that the illness is not their fault, and that they should try to get well by professional means (medications, and other alternate forms).

Illness narratives are a way for a person affected by an illness to make sense of his or her experiences. It is important for the individual with the disease/disorder to understand what they have been through and create positive ways of dealing with the ailment. Illness narratives also positively affect the families because it gives them a way to work towards helping the patients with their disorders.

 

MTV. “True Life: I Have Narcolespy”. Director Carlos Puga. MTV video, 41:12. October 18, 2011. http://www.mtv.com/shows/truelife/ (accessed July 23, 2014)

Karim, Taz. “4.1 Experiencing Illness” Class lecture, Medical Anthropology from Michigan State University, East Lansing, July 21, 2014.

Karim, Taz. “4.2 Illness Narratives” Class lecture, Medical Anthropology from Michigan State University, East Lansing, July 21, 2014.

 

This Post Has 3 Comments

  1. Tyler Lambert says:

    I assumed my perceptions of narcolepsy were way off base so I thought this would be a good disorder so look into. My understanding and experience with narcolepsy lies solely from what I have seen in the media. From your post as well as the narrative I examined I realize narcolepsy is more than sudden sleep attacks. One person from the Patient Voices: Narcolepsy talks about the struggles she has feeling rested. Also she mentions the need to take medication to sleep at night. I never thought individuals would have trouble sleeping with narcolepsy. A common misconception mentioned, is the medias perception that narcoleptic people just fall asleep randomly or suddenly eating lunch or in the middle of a conversation. I believe the individuals on the true life episode and the patient voices had similar experiences. The symptom expressed by the majority seemed to be the chronic fatigue. One person compared the feeling to a normal individual not sleeping for 7 days. Once the individuals in Patient Voices understood narcolepsy was something they were going to cope and life with for the rest of their life, they were able to make choices to life a more fulfilling life. One person mentions her career focus had to shift towards jobs that kept her on the go constantly so the lack of energy she felt from her syndrome were not felt as strongly. My perception of narcolepsy was very limited, but the individual point of view presented in these narratives gives me a much better understanding of the struggles faced when diagnosed with narcolepsy.

    Patient Voices: Narcolepsy. Accessed July23 2014. http://www.nytimes.com/interactive/2009/08/26/health/TE_NARCOLEPSY.html

  2. Laceey Ruble says:

    The illness narrative I found was a National Geographic documentary on narcolepsy called Sleepy Man. What makes this story different from True Life: I Have Narcolepsy is that it is a quest narrative rather than chaos. The man in the story, Dee Daud, shows how he is living with narcolepsy and how he has come to incorporate into a part of his identity, rather than simply a chronic condition he has to deal with. I think both of these narratives have valid points they are getting across. In the case of the True Life episode, the narrative conveys how hard it can be to learn you are living with a chronic and degenerative illness. One can lose hope in many things when faced with this news. Further, it is hard to cope with the social stigmas related to narcolepsy, since many people think individuals with the disorder can control their symptoms (e.g. the girl’s boyfriend). I think the girl’s negative experiences with medical professionals, her boyfriend, and family influenced this narrative to become chaotic rather than a quest. The girl’s unoptimistic diagnosis and shocked family/ friends mixed within a culture that expects doctors to cure all, placed this story into a downward spiral. Other the other hand, Sleepy Man shows a little bit more positive narrative, without sugarcoating the experience of living with narcolepsy. Dee Daud is a man living with narcolepsy, he understands there is no cure, but he is trying to not let that stop him from living his life. I believe Dee’s experience with narcolepsy is more positive because he has been living with it for many years and has a much better handle on how to live with the disorder. Further, he has a friend who takes care of him one hundred percent of the time. For him, having someone that understands and lives with the illness alongside him allows Dee to obtain a higher state of wellbeing. However, both narratives showcase a struggle with the cultural stigma of living with narcolepsy. At the end of his narrative Dee expressed how he wished more people understood what narcolepsy was. For example, he wished that when he fell asleep in public places people would help him rather than walk past him while assuming he that he is an alcoholic or drug addict. After listening to both of these narratives, I hope that as well. So often we have been taught through our culture to associate certain behaviors with one thing, but reality may be much different than what our perceptions have lead us to conclude.

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