I Have Narcolepsy

This episode of True Life focused on two women experiencing narcolepsy, a neurological disorder that causes excessive daytime sleepiness. People with this condition often get very tired and fall asleep while they try to complete everyday tasks like, work or school. Julie is a 16 year old high school girl who is trying to balance studying for her ACTs, and getting involved with extracurricular activities with her condition. About 4 months prior to the shooting of this episode she was diagnosed with narcolepsy and later, cataplexy which is usually associated with narcolepsy and results in a sudden loss of muscle control. She is triggered by laughter, so while she’s hanging out with her friends, she is prone to falling down, unable to move. Julie does not want to take medication because she fears the risks are too great and will impact her life in a negative way. Katy is a 25 year old woman who has been struggling with narcolepsy for 10 years. She works in real estate with her boyfriend who is her main support system. She takes a very high dosage of Adderall every day to keep her alert and her boyfriend wants her to stop the medication altogether because he is worried that it is negatively affecting her health. Both women have different ways of coping with narcolepsy; Katy is very dependent on her medication, while Julie refuses to take some even though her condition is worsening (2).

The type of narrative this episode uses to describe narcolepsy is the Chaos narrative (1). There is currently no cure for narcolepsy but it can be maintained and managed through extensive treatment. Therefore, people diagnosed with this disorder understand that this is something that they will have to deal with for the rest of their lives. In our culture, I think narcolepsy is understood as a serious condition. As a nation that relies on productivity for success, narcolepsy is a very inconvenient disorder. In the episode, Julie and Katy had difficulty doing important things like studying, working, spending time with friends and family. It was even affecting their relationships in a negative way. For instance, Katy and her boyfriend had a lot of trouble dealing with her disorder and it caused them to miss appointments, be late for work, and when she had trouble getting to sleep, he did as well. They had to communicate with one another and come together to figure out the best way to deal with this and still maintain a healthy relationship.

The sick role of this illness is not complete in people with narcolepsy. They know that something is not right and they seek medical help but this is not a condition that will improve over time and they are not excused from regular responsibilities. A person could be exempt from, let’s say driving, but driving is not a common factor in everyone’s life and can be solved through public transportation and other means. However, people with narcolepsy can explain their condition so that if they do happen to fall asleep in the middle of a task, they are not reprimanded for it.  In this case, their primary responsibility with this condition is maintaining it; whether they seek medication like Katy or a combination of medication and chiropracty like Julie. Either way, they are responsible for making sure that they have the least amount of episodes possible because it can interfere with everyday life.

The illness narrative can be useful in determining how to approach things such as treatment, which helps patients and doctors; and how to maintain a somewhat normal life that is useful for the patient’s relationships with family and friends. Julie’s narrative allowed her to find treatment reduced her risk for negative side effects and made her feel more confident that her methods were working. Katy also reduced her medicine dosage by half, which allowed her to be more alert and feel healthier. The experience of an individual with a specific condition is just as important as the diagnosis because some treatments may not be right for everyone. This is why it’s so important to be able to effectively communicate to reduce the chance of misunderstanding.

 

(1) Department of Anthropology. “Medical Anthropology Illness Narratives.” Michigan State University. Video. Accessed July 24, 2014. <http://anthropology.msu.edu/anp204-us14/week-4-lecture-2/>

(2) True Life. “I Have Narcolepsy.” MTV. Posted October 18, 2011. Accessed July 24, 2014. <http://www.mtv.com/shows/truelife/true-life-i-have-narcolepsy/1672872/playlist/#id=1672872>

This Post Has 1 Comment

  1. Emily Tassoni says:

    I found a website called Narcolepsy Network and its full of information and patient stories on dealing with narcolepsy. The story I read was about a woman named Amanda (link: http://narcolepsynetwork.org/about-narcolepsy/patient-stories/amandas-story/) who began experiencing symptoms at 16 and didn’t find out for sometime what her actual diagnosis was. Amanda sounds a lot like Julie, a very active high school student who is unable to live a normal life due to her disorder. Amanda however wasn’t on medication because she didn’t have the diagnosis so she had to drop out of school because she was passing out up to 5 times a day. It wasn’t until she fell and got concussed from hitting her head that her family decided to try to submit her for a sleep study. Amanda hadn’t even finished the sleep study before they knew she had narcolepsy. Amanda’s diagnosis was a new start for her because she knew that there was something wrong with her that was out of her control, not just lazy and tired for no reason. I think western culture played a big role in her experiences pre-diagnosis. In the U.S. being active and productive are two expectations of people in everyday living, so often when someone is too tired or doesn’t have the energy to be active or productive, they are thought of as lazy. Amanda had to face this criticism before her diagnosis and wasn’t able to voice how she felt for fear of being judged. After her diagnosis she felt more comfortable expressing her feelings, as it was now acceptable to not be as productive with her disorder as she was able to take the sick role. Also while I was searching for a narrative I came across another interview with Katy and her boyfriend from the episode if you’re interested! (link: https://www.youtube.com/watch?v=QYem9kzEP14)

    Narcolepsy Network. “Amanda’s Story”. Accessed July 26, 2014. http://narcolepsynetwork.org/about-narcolepsy/patient-stories/amandas-story/

    Youtube. “ZZZ, the Daily Struggle of Narcolepsy”. Accessed on July 26, 2014.https://www.youtube.com/watch?v=QYem9kzEP14

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