True Life: ‘I Have NF’

This episode followed three teenagers who have neurofibromytosis (NF), a genetic condition that causes painful tumors to grow throughout the body.  Each teen has a different experience with the illness: Philip has large facial tumors that disfigure him and impair his hearing and sight, Amber has particularly large tumors around her hips and leg, and Beckha has tumors in her spine and brain that make walking extremely difficult.  For the most part, all three stories follow the chaos narrative form, since NF is an incurable condition.  Beckha’s narrative is the strongest example of chaos form.  Unlike the other two, she has no other family members with NF and therefore feels more isolated.  She has battled against the disease for years with multiple surgeries on her spine and brain, but still has severe pain and trouble walking, which is extremely frustrating for her.  Philip also tells a chaos narrative, explaining the social ridicule he gets because of his disfigurement.  This particular problem is permanent, since his doctor explains that the facial tumor is too complex to surgically remove.  While Amber also knows that her condition will last all her life, part of her story follows a restitution narrative.  A plastic surgeon is able to remove a 3 pound tumor from her side, and though it doesn’t cure her condition, Amber sees this as a huge success.

All of these teens are embarrassed by their abnormal appearances in a culture that places a high value on looks.  However, for diseases like NF that stem from genetic mutations, our society does not stigmatize the sufferers for contributing to their own disease by personal fault.  All of the medical professionals who worked with the kids offered compassionate care, exploring treatment options and discussing them with the families to find the best route for improvement.

By acknowledging their illness, seeking help from doctors, and being excused from some school responsibilities because of time off for surgeries or learning disabilities, all three teens have taken on the sick role.

Sharing their narratives with the True Life TV show might empower them by showing a large audience what obstacles they face.  Ongoing conversations about their illness with family and friends maintain a social support system.  Openly discussing their symptoms and experience with doctors ensures their best medical treatment.  For these reasons, narratives are an important part of coping with and fighting against an illness.

2 thoughts on “True Life: ‘I Have NF’

  1. The post I chose to analyze discussed about the True Life episode, in which three individuals were suffering from neurofibromatosis. According to the summary that the individual wrote, NF is a genetic condition that causes tumors to go throughout their body. These tumors can occur in any location and are not only painful, but can inhibit one’s life and the way they are able to live, let alone contribute to society.
    For the personal experience I followed, I chose to read about Priscilla’s experience with neurofibromatosis. Her experience in unique, due to the fact that her experience is based off of what NF was like throughout her lifetime, as well as during her pregnancy; she is in a wheelchair due to her conflicts with NF. According to Pricilla, NF can range from small amounts of tumors and spots to huge tumors all over the body, which has the chance to delay learning in certain areas, and could become cancerous. Her experiences with NF while pregnant resulted in her getting more tumors over her back and stomach, which occasionally go away with time. The latest information she posted on her website stated that her doctor had recommended getting genetic testing done on her unborn child, to see whether or not they could be afflicted with the same disease. I would say her experience is very much so family related, as well as societal. I believe it is family related because she worries about not only her children being afflicted with this illness, but she is worried about how every time she goes into surgery, if she doesn’t survive, her children will no longer have a mother. Not only that, but having painful tumors affects her overall wellbeing, which doesn’t allow her to play with her kids as easily, which doesn’t help that she is in a wheelchair due to NF. Lastly, this is societally related because NF looks at an individual with tumors as someone that isn’t necessarily deemed attractive by society, since they aren’t necessarily in perfect health. Society may also look at an individual in a wheelchair, like Pricilla for instance, whom is in that due to her NF, and she could be treated differently because of her physical condition.

    http://www.wheelchairmommy.com/2011/nf-pregnancy-my-experience/

  2. I found a blog called “The Story of Me” which belongs to a woman who goes by Chelle. In this blog she explains her condition of Neurofibromatosis, as well as the hardships and struggles she has faced because of it. She displays more of a quest narrative and says things like “I’m going to die with NF, not because of it” and “I’ll be ugly later, and I’m not even on the pretty side now!”. She has accepted her illness and uses it to better herself. While reading her blog, what was obvious is that over the years she has taken on a sense of humor in order to shield herself from close-minded people. Slightly different than what your account of the individuals on the True Life episode of NF, she says that she has always felt a social stigma. Regardless of genetics, she says that she still feels as though people are judging her for a disease she has no control over. We live in a tough society in which heavy emphasis is put upon appearance, she laughs about her skin tumors in order to keep her head held high. Unlike the True Life episode, Chelle’s NF is much less severe, she only has a few skin tumors on her stomach and smaller ones on her face and neck. Due to the lessened severity of her condition, I think that socially she has been able to assimilate more easily than Philip, Amber and Beckha. I can’t comment on cultural differences because each individual is from the U.S.A. I do think that in our society, women feel more pressure to look a certain way and therefore the illness may be slightly more difficult for them to cope with than men.

    Source: Chelle Y. 2006 April 5. Neurofibromatosis (All About Me). [Web log comment] Retrieved from: http://www.chelleyoung.com/index.php/archive/neurofibromatosis-all-about-me/

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