I have Narcolepsy

I chose to watch True Life: I have Narcolepsy. This episode was about two girls, one named Julie (diagnosed four months ago) and Katy (diagnosed ten years ago) who both struggle with Narcolepsy and Cataplexy. Narcolepsy is a neurological disorder where individuals are extremely tired at inappropriate times during the day and fail to have a normal night’s sleep. Cataplexy is a sudden muscle weakness that disables the body to perform movements when a person laughs or cries.

The type of narrative that Julie is going through in the beginning is a Restitution Narrative. She believes that her illness is something she can overcome. Not until the doctor’s visit does she fully realize that she will never grow out of it. At this point she starts a Chaos Narrative. Her illness is permanent, she suffers socially, and is also frustrated. Katy experiences more of a Chaos and Quest Narrative. Her illness is also permanent and it is frustrating for her and her boyfriend, Robby, but she is trying to make changes and improve her health.

The culture and stigma stage for Narcolepsy is the same for most illnesses. I believe it is the lack of knowledge and understanding from healthy people to the suffering ones. For example, Robby does not think they are consequences to stopping Katy’s medications cold turkey. He also does not understand how hard it can be for Katy to try and live a normal life. Some people may think that narcolepsy can be controlled and taken care of, but like other illnesses there is not a cure. In this case, some people may not be empathetic towards Katy and Julie.

There was not a lot of the medical professionals in this episode. When they did show them, they were understanding and helpful. The doctors told Julie what her restrictions were (driving with Cataplexy, swimming without supervision) and gave her medicine to help her deal with her illness. One of Julie’s doctors even helped her balance both sides of her brain. I noticed that it was all westernized ways and when Julie’s mother introduced to her things about spiritual healings, she was not interested.

Both girls in the episode acknowledged that they were not healthy. They were diagnosed with Narcolepsy and Cataplexy and began to search for treatments. Julie was concerned with side effects from her medicine. Katy and Robby were distressed about her health because of the amount of pills she was taking. Acknowledging their sick roles was good for both girls; they found happy mediums that will help them cope with their illness.

Illness Narratives are useful for everyone including the patients, their families, and medical professionals because they make sense of the suffering, help everyone adjust to the disability, empower themselves, feel less-isolated, and model on how to continue living even though they are faced with a non-curable illness. It physically, mentally, and spiritually assists everyone involved.

 

 

MTV. “True Life: I Have Narcolepsy”. Director Carlos Puga. MTV Video, 41:12. October 18, 2011. http://www.mtv.com/shows/truelife/true-life-i-have-narcolepsy/1672872/playlist/#id=1672872 (accessed July 24, 2014)

This Post Has 3 Comments

  1. Adam Feuerstein says:

    The video I watched was about a girl who did not originally know she suffered from Narcolepsy. Jenny, a girl looking to make it into a university would occasionally fall into a sleeping state for an average of about 4 minutes but did not understand why. At first, her friends and jenny figured she was working too hard at studying and living a busy life so she would fall asleep as her bodies way of saying she needed to rest more. After continuing with this condition for quite some time jenny did research and found out her dad had narcolepsy. This video was then was largely about her visits with a doctor who ran test on her and gave her the prognosis. Jenny also learned there was no cure but was given a medication called modafinil to help control the attacks better. The video I watched also talked about cataplexy and how Jenny would have to make some lifestyle changes due to her illness. I saw this as a chaos narrative because Jenny was told there is no current cure but the doctor made her more hopeful by saying there is a way to help control it, which reflected a quest narrative. My video sounds different from yours in the fact that is was about learning what narcolepsy was and being diagnosed with the illness rather than people who had the illness for a long time. I think her family and friends seemed supportive of her condition but it was still seen as weird by others. This is shown when she falls asleep in a public place and the girl next to her immediately gets up and moves. The culture we live in will likely fear her for a long time because it is not a common illness as well as one we do not fully understand.

  2. Victoria Heilmann says:

    In my research, I was able to find a YouTube video that has a story from National Geographic, which depicts a man who also suffers from narcolepsy and cataplexy. The video I found seemed to have a lot of similarities to the True Life episode following people who have the same medical condition. The experience of the patient (Dee Daud) in the video I watched was quite sad because his narcolepsy was very severe and it held him back from a lot in life. The girls in true life also each has pretty severe narcolepsy and cataplexy as well. There were not nearly as many factors affecting the man in the YouTube story because he lived alone and only had one friend who acted as sort of a caretaker. The people in the True Life episode seemed to have a lot more factors affecting their situation such as their family members. Both the patients in the true life episode were females as opposed to Dee Daud who is a male, and the countries in which the patient’s live in were different but neither of these aspects seemed to have a big impact on their experiences. Socio-economic status obviously plays a role in any medical condition because lower income people often can’t afford proper health care but because there is no cure for narcolepsy, socio-economic status does not influence the experience all that much.

  3. Breanna Ramsay says:

    I was able to find an interview on a woman’s blog who’s husband has narcolepsy. She interviewed a woman who suffers from narcolepsy and cataplexy, just like the girls in the true life episode. Just like Julie and Katy, Cynthia struggles with living a normal life. She has taken multiple medications, but narcolepsy and cataplexy are not curable illnesses. Cynthia can not have a full time job and has some restrictions to her daily life activities. Unlike Julie who starts off experiencing a restitution narrative then experienced the chaos narrative, Cynthia is fully aware she is experiencing the chaos narrative. She knows that her illness is incurable. I think over all Julie and Katy’s experience with narcolepsy and cataplexy is quite similar to Cynthia’s. I think this is due to the fact they are coming from the same culture (U.S. and the western biomedical system). Cynthia, like Julie and Katy, has a great family support system. Though the members of Cynthia’s family don’t fully understand her illness they are still there to support her and care about her. They worry about her doing everyday activities, but understand she needs independence as well as support. Cynthia also went through multiple sleep studies and after a while felt like she was going crazy before she was diagnosed with narcolepsy and cataplexy. I think her feeling this way speaks volumes for how the biomedical system can make people with illnesses such as narcolepsy feel. Cynthia knew something was wrong, but it took an incredibly long time to diagnose her illness.

    http://narcolepticswife.blogspot.com/p/cynthia-i.html?m=1

    “Cynthia I, ” The Narcoleptic’s Wife, no date, http://narcolepticswife.blogspot.com/p/cynthia-i.html?m=1

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