I have narcolepsy

People with narcolepsy have overpowering sleep spells.  These sleep spells can occur at any time.  The video I watched explained the lives of two different girls that have narcolepsy.  One of the girls is named Katy.  She has had narcolepsy for about a decade.  Around the age of 15 she began getting tired all the time.  She was prescribed medications to keep her awake.  She now takes a dosage about 12 times what the normal person would take.  Her boyfriend thinks she should stop taking her medication because it has dangerous side effects and may be shortening her life.  She finally agrees to try life without her meds.  When she does her cataplexy gets worse and she sleeps all of the time.  Cataplexy is sudden muscle weakness while conscious.  Her relationship with her boyfriend is being put to the test.  Julie ends up living her life on a smaller dosage.

The other girl, Julie was diagnosed with narcolepsy about four months ago.  She has multiple episodes of cataplexy every day.  She does not want to start taking drugs, but her mother wants her to.  She is insistent that it is her choice and not her moms.  Once she started falling and hurting herself she decided she would give medication a shot.  At the neurologist she is told that she will now grow out of this.  She cannot drive unless she doesn’t have episodes of cataplexy.  After beginning her medication she realizes that it is very helpful.  She can even play frisbee with her brother.  The downside is that her tiredness is worse when the medication wears off.  This makes it difficult for her to do school work.  Doctors want to work on balancing her brain by stimulating it.  It really helps her.

This narrative is descriptive of Julie’s and Katie’s lives, hardships and goals.  They want their lives restored to normal.  This video uses a chaos narrative.  This narrative allows you to see what people suffering from narcolepsy live like, and the problems they face everyday.  Their sick role is incomplete.  People with narcolepsy know something is wrong and want to fix it, but they will never be able to fully cure it because there is no cure.  This illness narrative is helpful because it helps people understand the illness and it allows patients to understand and treat the illness more effectively.  Many people view narcolepsy as dangerous and weird, but it is not something that can easily be stopped.
People with narcolepsy have overpowering sleep spells.  These sleep spells can occur at any time.  The video I watched explained the lives of two different girls that have narcolepsy.  One of the girls is named Katy.  She has had narcolepsy for about a decade.  Around the age of 15 she began getting tired all the time.  She was prescribed medications to keep her awake.  She now takes a dosage about 12 times what the normal person would take.  Her boyfriend thinks she should stop taking her medication because it has dangerous side effects and may be shortening her life.  She finally agrees to try life without her meds.  When she does her cataplexy gets worse and she sleeps all of the time.  Cataplexy is sudden muscle weakness while conscious.  Her relationship with her boyfriend is being put to the test.  Julie ends up living her life on a smaller dosage.

The other girl, Julie was diagnosed with narcolepsy about four months ago.  She has multiple episodes of cataplexy every day.  She does not want to start taking drugs, but her mother wants her to.  She is insistent that it is her choice and not her moms.  Once she started falling and hurting herself she decided she would give medication a shot.  At the neurologist she is told that she will now grow out of this.  She cannot drive unless she doesn’t have episodes of cataplexy.  After beginning her medication she realizes that it is very helpful.  She can even play frisbee with her brother.  The downside is that her tiredness is worse when the medication wears off.  This makes it difficult for her to do school work.  Doctors want to work on balancing her brain by stimulating it.  It really helps her.

This narrative is descriptive of Julie’s and Katie’s lives, hardships and goals.  They want their lives restored to normal.  This video uses a chaos narrative.  This narrative allows you to see what people suffering from narcolepsy live like, and the problems they face everyday.  Their sick role is incomplete.  People with narcolepsy know something is wrong and want to fix it, but they will never be able to fully cure it because there is no cure.  This illness narrative is helpful because it helps people understand the illness and it allows patients to understand and treat the illness more effectively.  Many people view narcolepsy as dangerous and weird, but it is not something that can easily be stopped.

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 25, 2014)

This Post Has 5 Comments

  1. Alison Johnson says:

    I watched a YouTube video of Carrie-Ann, a girl who also suffers from narcolepsy. Socio-economic status plays a large factor in Carrie-Ann’s fight. She is taking four pills a day each at 400mg. Her health insurance won’t cover all the different medicines she’s taking or has tried. She is currently filing for disability and hoping to get some assistance from the government. She is self-employed, and finds it too difficult to work outside of the home. Carrie-Ann cannot have any sort of license. Both Katy and Julie also tried different doses of medicine to help regulate their narcolepsy. Carrie- Ann does not know if she suffers from cataplexy as well just like Katy and Julie. She does know that she has a muscle disease though. Culture also influences Carrie-Ann’s experience with narcolepsy. She is mostly confined to her home, and has a hard time getting out seeing her friends and family. She isn’t able to have “normal” outings such as someone her age should be doing. Carrie-Ann can’t go out and play Frisbee like Julie does, because she suffers from a more sever case. I agree with your statement that people with narcolepsy want their quality of life restored to how it was before.

  2. Vu Ho says:

    At first the person with the narcolepsy want to announced that it is a misunderstood disorder. Explaining that it is not a disease, but a disorder in neurological system that there are no drug for a cure. Before being diagnosed, she have been called lazy and stupid because of her sudden sleeping in class. Her life was difficult and dangerous because she experience extreme difficulty of staying awake in class, cataplexy, sleep paralysis, hallucination, and automatic behavior. Many time due to automatic behavior she said that she was crossing the street while asleep and she could have been seriously injured or even dead.
    She went in the doctor saying that she might have necropsy, she was not convinced and want to do nothing about it. But after 6 months she did some testing and provided with medication. The medication greatly changed her life, being able to stay awake and she felt that it made her more productive and regained her control of her life. Not only that she also understood that people misunderstood her condition and have more self-confidence because she know more about her condition.
    In comparison with your writing being informed is what change their lives. If they know more about their narcolepsy it makes their life much more manageable and think of a life more positively and have self-confidence for them. Therefore it I s important to talk to the doctor for more information and get the proper treatment. Even they don’t want to take the medication, it will mostly increase their quality of their life.

    YouTube. “Narcolepsy Info and Experiences
    .


    accessed July 26, 2014.

  3. Jaana Ashtiani says:

    I chose to watch a youtube video called “Diagnosing Narcolepsy,” which was produced by Harvard Medical School doing a study on several patients who were thought to be narcoleptic. This particular study revolved around a young girl named Aliza who has had issues for several months now involving incomplete and random sleep cycles. Aliza finds herself constantly tired, exhausted, and with no motivation to do anything else. She could sleep for hours at a time, only to wake up and find herself just as tired as before.
    Unlike Julie and Katy from TrueLife, Aliza was definitely a more upbeat and active girl. The medical officials even claimed that with her extremely “bubbly” personality and active lifestyle, this diagnosis of narcolepsy almost did not make sense. Unfortunately this documentary did not cover the part of her life that involved taking medication, so I was not able to see the effects on her. However, another major difference with Aliza was that she found joy and relief in her diagnosis. She claimed that this issue had taken a big toll on her relationship with her family, and that knowing that there was actually something medically wrong with her gave her some relief that she was not just making it up. From this statement it became somewhat transparent that her sisters and family in general had not been too understanding of her constant exhaustion, and perhaps this pushed her to believe that she was making it up or that there was something else wrong with her. Her narrative became somewhat more of a quest narrative, where she saw this diagnosis as a beneficial thing. Also, Alizas socio-economic status was definitely in the higher range of things, and seeking medication and help did not seem so impossible, making her illness more manageable.

    Youtube, “Diagnosing Narcolepsy.” Harvard Medical School.
    http://www.youtube.com/watch?v=ZiPPqNh1jzg
    accessed July 27 2014.

  4. Nia Franklin says:

    I found a narcolepsy illness narrative from the Narcolepsy Network. The first story I read about is about a 16 year old girl in high school that seems to have a lot of the same problems as Katy in your illness narrative. Both Katy and Amanda from the Narcolepsy Network struggled through high school and being involved and keeping up with their studies. Amanda was very involved in high school. She was on the JV softball team and an honor student. Amanda began passing out randomly at school up to 5 times a day. Eventually Amanda had to be taken out of school because of her narcolepsy. She began to lose all her freedom and privacy. She couldn’t even go to the restroom without leaving the door open. Her social life also began to suffer because she could no longer go hang out with her friends. She eventually lost all her friends. When Amanda was finally diagnosed with narcolepsy she was relieved to know she wasn’t just a lazy slob. I think in other cultures Amanda’s problem wouldn’t have been thought of as a disorder and thought that maybe she is just lazy and doesn’t care. Our western style of medicine I think helped lead to the conclusion that Amanda had a disorder. It’s not her fault.

    Narcolepsy Network
    http://narcolepsynetwork.org/about-narcolepsy/patient-stories/amandas-story/
    accessed July 27 2014.

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