True Life: I Have Narcolepsy

The episode I chose to analyze was called True Life: I Have Narcolepsy. In this episode two girls are followed, Julie, 16, and Katy, 25. Both suffer from the conditions narcolepsy, sudden overpowering sleep, and cataplexy, sudden loss of muscle control. I believe that in this True Life, both Julie and Katy are giving quest narratives, but Julie struggles in some parts of the episode and gives somewhat of a chaos narrative. Narratives can be very helpful and important to patients, family, and healthcare providers alike in helping each other understand what the other person is feeling. The only way to portray what you are feeling- you must tell others who surround you and seek help when necessary. Some examples of these from the lecture are when people are suffering from mental illnesses such as postpartum depression and PTSD. The only way to get help is to tell others how you are feeling.

Katy had been suffering from these conditions since she was 15 years old and was already on a large amount of medication when the episode began. Her boyfriend was very concerned about her health on the medication, and wanted her to quit. Katy decided to quit cold- turkey in order to appease her boyfriend, and struggled greatly after doing so. Katy tried to stay off the medication for some time, but could barely get out of bed in the morning; which caused even more problems with her boyfriend. After arguing and almost breaking up, they decide to come to an agreement that Katy did need to take some medicine, but a more controlled amount. We are told that she did manage to cut the dosage amount nearly in half. After doing so, she began to live a much more normal every day life. The only time Katy mentioned going to a medical professional, she overslept and missed her appointment.

Julie, on the other hand, had only been diagnosed with the conditions for about four months and was not yet on an a.m./p.m. medication schedule like Katy. She was very afraid of the side effects and, to me at least, it seemed like she did not even have any interest in getting help. After some convincing from her mother, and after falling during a cataplexy attack and hurting herself, Julie decided to go see a doctor. The doctor told her that she was unlikely to grow out of her condition, especially without treatment, and suggested she started taking medications. Before agreeing to take the pills, I would say Julie’s narrative was one of chaos, but then when she agreed to try and improve herself it became a quest narrative. She began feeling better and the symptoms of her condition slowed down greatly. Julie’s mother also suggested alternative forms of healing, and decided a chiropractor could help stimulate Julie’s brain and help bring her back to normal. At the end of the episode we are told that Julie had no cataplexy attacks in months, and was doing much better.

I believe that culture does not have a very good understanding of narcolepsy and cataplexy. People seemed very concerned and uncomfortable when they would be around Katy or Julie and an attack would occur. It also seemed that Julie was somewhat embarrassed by her conditions at first, but at the end of the episode opened up to her fellow classmates about them. Furthermore, Katy’s boyfriend helped her with basically every thing at the beginning of the episode, but then slowly became less and less empathetic towards Katy. He did not understand how she felt, or understand the possible effects of asking her to stop her medicine cold- turkey.

Finally, according to the lecture, the sick role is the practices, rights, and responsibilities that come with being a person suffering from an illness. This includes things like submitting to the care of a professional and sometimes being excused from regular responsibilities. I believe that both girls used their rights and responsibilities to try and take control of their conditions and keep themselves safe. Julie was slow at this at first, with not wanting to get help from professionals, but eventually learned that it was a way to get help. The only thing about Katy, is that she has a responsibility in controlling the amount of medication she was taking, though, and seemed to have a lot of trouble doing so.



True Life: I Have Narcolepsy

2 thoughts on “True Life: I Have Narcolepsy

  1. I elaborated on the illness narrative of Kailey, a narcoleptic 16 year old that has to take medication in order to fall asleep at night even though it makes her nauseas because she’s missing the chemical that regulates sleep and wake cycles. She also has to take medication to help her stay awake throughout the day. She used to be a dancer and seems to feel limited by the effects Narcolepsy has brought on to her, which sounds similar to Julie in the True Life narrative. Julie is also struggling in learning to accept having Narcolepsy and overcome the embarrassment of her condition. Kailey explains how her life is much more difficult than a lot of her peers because of her condition and people don’t realize all the medications she needs just to stay awake throughout the day and fall asleep at night. This also reminded me of Katie from the True Life narrative because her boyfriend wants her off the medication she is taking so she complies but this is detrimental to her health. Her boyfriend doesn’t take into account the adverse effects this could have on Katie. In the cases of Kailey and Julie, I feel that social factors heavily influence their illness experiences. Kailey is upset because she can no longer do the things she used to be able to like dancing while others around her can. Julie is not prepared to deal with the stigma her classmates may form on the basis of her being narcoleptic. Julie may have been so apprehensive about sharing her Narcolepsy initially because culturally, it is a condition that may not be taken very seriously which is a result of the media portraying the disorder as humorous or dramatic that someone afflicted could fall asleep mid conversation or in the middle of a meal.

    Barrow, Karen. “Patient Voices: Narcolepsy.” The New York Times. The New York Times, 07 Oct. 2009. Web. 29 July 2012. .

  2. I read an online illness narrative of a woman named Tricia, who also suffers from narcolepsy and cataplexy. Her symptoms of falling and losing muscle control began in her middle age, when she was a hard-working emergency room nurse and a mother of three. She had established herself as an accomplished and dependable woman before developing narcolepsy, which made her experience of the illness very devastating. Before suffering from the disease, she was used to caring for others—both in the hospital where she worked, as well as in her family where she raised her children. After the symptoms of narcolepsy set in, she was unable to transport patients or drive her children, due to her risk of falling. This was a huge loss of her self-identity. While Julie and Katy from the episode by no means had an easy experience with the disease, they were diagnosed with narcolepsy at a younger age. Thus they did not have a career at stake, or a family to support, when they entered into the sick role.
    Tricia also detailed her seven-year odyssey from the first time she fell into cataplexy to when she was correctly diagnosed with narcolepsy. Until then, she bounced between specialists who treated her unsuccessfully for a seizure disorder. One doctor even told her that the seizures were completely psychological in origin, which led Tricia blame herself for her illness. This chaotic period of losing her independence due to frequent falls, not understanding her illness, and failing to receive proper medical treatment was very difficult for her. Julie and Katy seemed to have received a correct diagnosis earlier in their illness.

    Tricia’s narrative can be found here:

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