“I Have a Traumatic Brain Injury”

-In this episode it followed people who had suffered traumatic brain injuries. These people mostly followed a Restitution narrative in one way and in other a Quest narrative. These people suffered injuries and accidents and did not have these illnesses one day and then had brain injuries the next. One of the subjects was trying to return to school after going through extensive rehabbing from his brain injury. He still had to walk with a cane and had slurred speech, but was able to make a concerted effort to go back to school. Another one of the subjects, who was in an auto accident lacked facial recognition and social abilities after his brain injury and was trying to relearn social behaviors and reunite with his friends from school.

-These people mainly followed the major six aspects of an illness narrative. They kind of told what their story was generally about, then orientated their stories by saying what caused their injuries, what deficits they suffered from, and how it was presenting itself, then the complicating action was not only the injury itself, but how they were at rejoining their past lives, they then evaluated their illnesses and how they applied coping tools, and then how its resulted in where they are now and the overall effect it has on their present situation. Mostly these were quest narratives because they had the goal of making their lives complete with their injuries, not actually being cured on their symptoms.

-Particularly for the boy who had issues recognizing faces and adhering to social norms, it seemed there was a bit a cultural stigma. He was seen as being rude or disagreeable by the people who knew him before his injury, particularly his family and friends from school. He was also worried how his illness affected others, whether or not they would be offended that he no longer recognized them. The stigma was not so much on the illnesses itself, because no one can help a traumatic brain injury, but it was more the people around them not understanding why they were behaving in a certain way and it not being immediately obvious what injury or deficits they suffered form.

-These subjects were able to accept their sick roles and take on the rights and responsibilities of their injuries. They did this mainly by adapting to their new roles in their past lives. I think these illness narratives were not only helpful to the person with the disability themselves to grapple with their new lives, but also helped them to relate to those around them. And it helped their family and friends better connect with the person experience and illness and how their lives will be from now on.

 

MTV. (Producer) (2010). “true life: I have a traumatic brain injury” [Television series episode]. In True Life. MTV. Retrieved from http://www.mtv.com/videos/true-life-i-have-a-traumatic-brain-injury/1638298/playlist.jhtml

I have Narcolepsy

I watched the True Life episode about two girls that are living with Narcolepsy and cataplexy.  The episode follows Julie and Katy.  Julie was recently diagnosed with Narcolepsy and cataplexy.  Katy has been living with Narcolepsy and cataplexy for a decade.  They both follow a chaos and quest narrative.  It is a chaos narrative at first because they are all of a sudden hit with the excessive daytime sleepiness and the cataplexy.  The cataplexy is a sudden loss of muscle control that often occurs with strong emotion such as laughing. This is also a quest narrative because they see the illness as a journey.  Both Julie and Katy find a good balance with the medication, which greatly improves their lifestyles.

Our culture isn’t very familiar with Narcolepsy.  There’s kind of a stigma related with it because most people aren’t familiar with the disorder and there is no cure.  The reason I chose this episode is because I have Narcolepsy.  I am fortunate enough to not have cataplexy and not as severe as Julie and Katy do.  I just have the excessive daytime sleepiness.  Most people don’t understand how you can be so tired all the time.  I experienced the same situation where I can’t fully function and be totally alert without the help of some medication.

The experience that Julie had with her doctor was a very scary experience for her.  She didn’t want to be put on medication.  Katy, on the other hand, was taking too much medication.  Julie eventually found a good balance with medication and going to a chiropractor.  Katy eventually took less Adderall.

The sick role for both of them eventually became unbearable.  They both knew their health is abnormal.  They both sought out the care of professionals and they were excused from regular responsibilities. They, however, found that they could not continue not going about a regular day.  Julie found she could not continue not doing things just because of her cataplexy.  Katy found she not continue sleeping in bed all day and not depending on her boyfriend for everything.

They both were apart of the complicating action of the illness narrative.  They both saw in increase in suffering.  Julie’s condition got worse because she didn’t want to be on medication.  Katy’s condition got worse because she stopped taking her medication.  They both went through the evaluation and resolution stage.  They were both suffering, decided to they were going to change how their life was going, and they both came out stronger because of it.

Sources: http://www.mtv.com/videos/true-life-i-have-narcolepsy/1672872/playlist.jhtml

Lecture 4.1 and 4.2

 

True Life: I Have PTSD

During this episode of True Life veterans were introduced to the viewer, all of which were suffering from Post Traumatic Stress Disorder. They were shown in different stages of the illness and recovery process, all facing their own individual problems. One was attempting to self medicate with alcohol because his recommended medicine wasn’t helping. He was however looking to start a program to help people like him and in his own way, using it to help move on from what he’s experienced. Another was forced into a situation in which he may have to leave his support system to find a job. Although he had attempted suicide previously, he was doing much better but putting him in a new environment without the people that helped change his negative mindset could result in a relapse.

All those that were suffering from this disease, although recovering in different ways, were suffering from similar, if not the same, symptoms. They were very depressed, traumatized, angry, scared, and in some cases volatile. They have very low tolerance for their anger and tend to lash out unexpectedly.

I believe the types of narrative this story conveys are both Quest and Choas. This is because in a Choas narrative they feel that socially their condition isn’t really accepted. Also they feel as though this is an illness they will always face and may not get better although they are hopeful. This is why I also see it as a Quest narrative. They think that they can learn from this experience and in the case of the veteran who wanted to start a program to help others with PSTD, they can help others. Some of the veterans took responsibility for their illness and were ready to accept that part of recovery. But not everyone can be ready for that. I think that personal experiences and what societal norms are set in place where a person is from shape how one can recover or adapt to life with such an illness. PSTD isn’t really the individual’s fault, it is more something that is just a side effect.

These narratives are very helpful in determining the right path for recovery for a patient. I think that through learning how a person wants to explain their story it can show helpful clues as to how one should treat that individual. If they feel they aren’t on a quest journey and there isn’t hope for them, perhaps this would change the chosen health care plan for that individual. They may need more one on one counseling or a stronger form of medication. When reading about Paternal Post Partum Depression, I felt that I couldn’t really buy into the idea. However, after reading a personal experience, I was able to see a fully painted picture of how it happened and how the father felt. It justified the illness in a way, and showed me the hope that he had and that he wanted to find peace in his illness, not be held back by it.

True Life: I Have Narcolepsy

The True Life episode that I chose is I Have Narcolepsy.  This episode follows two young girls, Julie and Katie, and documents how they live their lives while suffering from the medical condition Narcolepsy and Cataplexy, a condition associated with Narcolepsy.  The episode defines Narcolepsy as a neurological disorder that causes powerful, sudden sleep spells and Cataplexy as sudden muscle failure.

MTV uses the True Life series as a quest narrative in an effort to show how those highlighted in each episode overcome their struggles.  The girls in this episode
present a chaos narrative based on the affect the condition has on their lives.  It doesn’t appear that there is a true stigma associated with the disease since it is a neurological disorder beyond their control.  The stigma that I can associate with the disease is the amount of medications that the girls need to take to offset the symptoms the disorder causes.  Both girls have extensive interactions with physicians who prescribe
powerful drugs that are taken in an effort to decrease the severity of the condition’s symptoms.  Each girl’s reaction to their physician’s advice is different.  Julie worries that the side-effects of the drugs will be as debilitating as the condition itself and fights her mother about taking them.  While Katy is taking a growing amount of pills prescribed to her by her doctor but in her case her boyfriend is worried about the pills affects on her health and pushes her to stop taking them.

Illness narratives can be very useful, especially to the patients and those around them.  As described in the lecture, illness narratives provide the sufferer with the ability
to openly discuss their condition with others and educate them about it.  For those  round the patient, illness narratives allow for them to be educated by the patient and share in the suffering the patient has to endure.

True Life: I Have Schizophrenia

In the True Life episode, “I Have Schizophrenia”, a group of young adults is followed throughout their everyday lives to evaluate how this illness has come to affect their lives as well as how they manage to cope with this mental illness. Each one of them experiences this illness different and that influences their decisions on medical care, personal relationships and everyday interactions with the outside world. Within the American culture, people that suffer from schizophrenia are often thought of as crazy and mentally unstable. It is common for society to want to separate them out from the rest of society by putting them in mental hospitals or psychiatric wards.

Amber is a college student that was diagnosed with Paranoia Schizophrenia after her first year in college. The symptoms of this disease began to affect her schoolwork and her interaction with the people around her so she was hospitalized, treated and is now doing much better. Upon her return to school, she feared that her heavy schedule could possibly trigger an episode of her illness so she decided to cut back her course load and is now back on track. The illness narrative that she used to tell about her illness is the restitution narrative. She utilized this method in order to tell how she started, how she sought treatment and how through monthly visits to her therapist and daily medication there is a resolution to her problem. She states towards the end of the episode that after going to a support group meeting she was able to, for the first time; tell a group of people that she had this illness but that she was still a normal person. She has taken on her sick role by acknowledging that something was not normal with her health, received treatments and took some time away from her normal life to get better.

Josh’s story is told using the chaos illness narrative. His story does not have a concrete beginning, middle and end. He starts out living in this hotel because his mother kicked him out in fear for her and her daughter’s safety. He decided to not take medication because he enjoys hearing the voices in his head, stating that they keep him company. Josh has chronic episodes of delusions and paranoia that he admits to experiencing but does not see an end to these symptoms of his illness because he does not believe that he has a problem. He uses this illness narrative to display distrust in medical practices and medicine. He has been hospitalized 16 times and feels that self-medication through marijuana is the best means of help.  Josh did not take on the sick role. Acknowledgment of an illness is not present and therefore feels that any sort of treatment is deemed unnecessary.

True Life: I Have Narcolepsy

This episode of True Life is about two women ( young women ) that have been diagnosed with Narcolepsy. People that have this condition are overcome with the urge to sleep at the wrong times. The girls, Julie and Katy, also have an accompanying disorder, Cataplexy which consists of muscle failure, much like a temporary paralysis.

The type of narrative for this type of disease is the Chaos Narrative because it is a chronic, degenerative type of condition.  It does include social suffering. There is a social stigma for someone suffering with this condition.  It is difficult for them to explain this to others and for others to understand and empathize.

The persons that are sick need to acknowledge that they have a problem.  They need to seek the care of a professional and be excused from regular responsibilties.

Illness narratives are very useful, people’s illnesses do not occur in a vaccum (from the lecture).  The narrative helps the person telling it (the person who is sick) make some sense of his suffering and feel empowered.  The illness has not taken them over–they have some sense of control over their pain.  People talk about their illness and how they feel and perceive the problem to be, from their perspective. The Restitution Narrative works with a patient with a temporary illness that will have a cure at some point. The Chaos Narrative works with a chronic, degenerative condition and does include social suffering.  It helps the sufferer to talk about this and feel like they are not alone. The Quest Narrative is a journey.  The emphasis is on emotional and spiritual healing over physical restoration.  One example mentioned in the lecture was breast cancer survivors, and another that was mentioned was Alcoholics Anonymous groups.  Any social support group such as a substance abuse group or other group would serve the same function.

 

I Have Narcolepsy

I watched the True Life episode “I have Narcolepsy.”  This episode followed the lives of two young women, Julie 16 and Katy 25, who were suffering from the disorder of narcolepsy, as well as cataplexy, which is when a sudden loss in muscle control.  I believe that both Katy and Julie start out with a quest narrative, but run into a problem which brings them into a chaos narrative, but then are brought back to the quest narrative.  With this and many other illnesses, the most effective way of getting better is to seek out help.  This could be going to your doctor and seeing what can be done to alleviate some of the symptoms, or get rid of them entirely.  Another thing you can do is talk to someone who is also suffering from the same illness.  You may not get any medication or anything, but you get to talk with someone who knows what you are going through and understands how you feel which can help relieve some of the stress that you may feel.  Also, that person may be able to help with some non medical approaches to alleviating some symptoms.

Julie had been diagnosed with narcolepsy for 4 months and she tried to go through her daily live as she used too.  She would go out with her friends, tried to go to her dance class, and go to school.  Eventually the narcolepsy and cataplexy got to be too much for her, and with some coaxing from her mom she went to see her doctor.  He told her that her condition would probably not get better, and not taking anything to help with sleep and her cataplexy was not helping.  At this stage she goes from a quest narrative to a chaos narrative.  She feels lost and alone, not wanting to take the medication because she is afraid of the side effects.  Her mom eventually points out some alternatives to medication and she begins to go to a chiropractor.  After doing so she says she feels better than ever and has had no major cataplexy attacks in over a month.

Katy has had narcolepsy since she was 15, and has been taking a large amount of medication for her condition.  With the help of her boyfriend she has been able to get through her normal day to day life.  But recently her boyfriend has been worried about the amount of medication she was taking so he tells her she should try not taking any medication for a while and see if that helps.  She quits taking the medication, and her condition begins to worsen.  This is when she takes the path down the chaos narrative.  Her condition is worsening, she is having cataplexy attacks, and through all this she is beginning to lose her boyfriend.  Eventually they make up and Katy begins to have more control with the amount of medication she takes.  She is down to less than half the medication she used to take and she has never felt better.

Narcolepsy is not a very well known illness so it is taken differently in different cultures.  With Julie, whenever she would have a cataplexy attack her friends would worry about her and wonder if she was alright.  With Katy, when she was at the bar with their friends and she had an attack her friends would help her out but everyone else would talk softly and ask each other what is wrong with her.

From lecture, the sick role is the practices, rights, and responsibilities that come from being a person suffering from an illness.  These things include following instructions from care providers and other officials.  Both these women followed this to try and take control of their situation.  Julie was a little reluctant when she found out her condition would not get better, but once she took control and started to do what was asked of her, her condition started to improve.  With Katy, she was very dependant on her boyfriend and took too much medication.  But once she realized what was important and what she had to do, her reliance on her boyfriend and the medication lessened and she was able to cut her medication usage my more than half, and improve her relationship with her boyfriend.

“I Have Diabetes”

This episode revolves around three young adults coping with diabetes, coming to terms with their diagnosis and limitations, navigating the social realm with their disability, and facing difficulty in adopting the disciplined lifestyle required. The characters include Kristyn, a woman in her mid-twenties with $12,000 in debt working eighty hours a week to pay off medical expenses, who is forced to resume living with her parents. Next, Jen is a nineteen year old struggling to modify her eating habits and facing pregnancy complications due to diabetes. Matthew is a twenty year old student who does not want his condition to interfere with his college partying experience.

The illness narrative of the characters resembles the Chaos motif, since diabetes is a chronic affliction posing degenerative and life-threatening consequences with failure to administer insulin and stabilize glucose. Helplessness and a sense of spiraling out of control are prominent themes in this episode. For instance, after working multiple shifts, Kristyn breaks down crying and confides in her friend about feelings of social isolation. Along the same lines, after her newborn is put in the neonatal intensive care unit, Jen cries to her husband that “It’s not fair…I feel like this is all my fault, and there’s nothing I can do about it,” illustrating her sense of desperation and guilt. These examples also highlight other features of the Chaos Narrative, including hopelessness surrounding potential for a normal life, being overwhelmed by the intensity of the illness, and intimate relationships being the witnesses to the patient’s testimony.

The narrative is used by characters in order to explain decisions or justify health-compromising behavior to self, family, friend networks, and health care personnel, to mobilize sympathy and emotional support, to legitimize their sick role, or to involve others in their treatment selection or therapeutic course.  For example, Kristyn uses narrative in talking to her mother in order to rationalize her decision to go to the bar despite being sleep deprived, while Matthew prepares roommates for what they should do in a diabetic emergency.

Adoption of the sick role and revealing of their illness narrative is stigmatizing for the characters, as their condition precludes them from engaging in culturally-prescribed behavior for individuals of their age group. For example, Kristyn is socially alienated since her medical bills have forced her to forgo independent residency and work two full-time jobs. Jen has difficulty being estranged from our culture of fast-food consumerism, and feels excluded when she cannot indulge in sugary foods at the buffet like her mother.  Matthew feels pressured by friends at his birthday party when he cannot conform to social norms for imbibing alcohol.

This episode also portrays how the experience with medical professionals represents a transactional exchange between patient and practitioner, where they negotiate modification in treatment employed and articulate the extent of ‘the sick role’ of the patient. This underscores the superior position in the social hierarchy occupied by the doctor, who is the gatekeeper to treatment modalities and has power to impose diagnostic labels and exert control over patient behavior. For instance, Jen’s doctor had her switch from oral medication to injections despite her objections, and her physician changed her diagnosis from Type II to the more restrictive, irreversible Type I. In addition, Matthew felt as though he had to convince his doctor that he could manage his condition and consume alcohol, and resisted the sick role the biomedical community had assigned, not wanting to compromise his partying.  Moreover, the characters forgo certain rights in assuming the sick role, such as Jen’s right to deliver the baby when and how she wanted, and Matthew’s right to drink without inhibitions (instead, he has to take glucose readings at parties and carry Mountain Dew in case of hypoglycemia).  Sick role responsibilities portrayed include managing the financial burden of illness in Kristyn’s case, and complying with a dietician’s orders in Jen’s case.

The illness narrative is useful to patients in documenting their illness journey, deriving meaning from illness, and re-capturing a sense of agency. Importantly, the narrative can be a tool of catharsis and introspection, enabling the patient to self-reflect on their decisions and reactions and to find self-actualization through the transformative aspects of illness. In particular, the lecture underscored how the Restitution Narrative provides hope for cure by emphasizing the impermanent nature of illness, the Chaos Narrative provides acceptance and resignation, and the Quest Narrative provides self-empowerment and enlightens an individual about a positive metamorphosis in identity that can occur as a result of illness.  On the other hand, the illness narrative is useful to family because it offers a coherent scheme of events for the purpose of clarity and provides insight into the experiential facets of illness, such as the patient’s battery of emotions. For health care providers, the illness narrative can communicate subjective feelings of pain and distress and showcases a logical timeline of symptom expression and remedies pursued, which may illuminate etiology or better avenues for treatment.

As lecture stated, benefits for listeners with similar conditions include finding a sense of community and advice for recovering autonomy and living an enriching life with the illness. For example, Craig Mullins found solidarity with other men who had paternal postpartum depression, raised awareness about the disease, and identified afflicted men by releasing his illness narrative. Moreover, he was able to find redeeming aspects of confessing his illness experience, as demonstrated with: “Recognizing that what you’re experiencing is real and then seeking help…demonstrates strength and courage” (Stone, 2012). Likewise, on his YouTube video, Jeremy divulges that he posted his YouTube video illness narrative “in an effort to connect with other people out there who understand” (Jeremy, 2011). Hence, his illness narrative serves to initiate friendships with others with bipolar disorder, to share coping strategies, and to create a social identity through their shared suffering.

References

Jeremy. (January 30, 2011). My Story [Video File]. Retrieved from http://www.youtube.com/watch?v=dHS0rvizbJo&feature=related

Stone, K. (April 24, 2012). Depression in Men: A Dad’s Story of Male Postpartum Depression. Postpartum Progress: Together, Stronger. Retrieved from http://postpartumprogress.com/depression-in-men-a-dads-story-of-male-postpartum-depression

 

True Life: I have diabetes

This true-life episode revolves around three individuals whom have diabetes. These three people, with different lifestyles, behaviors, and have never met each other, are dealing with the effects of this disease. The first individual is Kristen, who had to move back in with her parents, due to the high costs of paying for her health care bills.  She must work long hours in order to pay off her bills and experiences conflicts with her mother, over how often she is working and how it is making her even more sick; though working is the only way that she is able to pay off her bills. The second person presented in this documentary is Matt and he is a college student that has had diabetes ever since he was a teenager. He had managed the disease well, up until he went to college and started participating in binge drinking, which affects his blood sugar.  He does not want to participate in missing out on the college experience, though every time he drinks, he is risking his life, since the drinking messes with his blood sugar so much. Jen is the final individual that is participating in this documentary and she never developed diabetes until she became pregnant. She is having a difficult time with the dietary restriction, and if she does not get it under control, she has the possibility of herself, or her baby being harmed. Jen ends up having an induced labor for her child. I feel as though this follows the chaos narrative, since Kristen, Matt, and Jen will have to deal with diabetes their whole life, and will have consequences to deal with if they choose not to take care of themselves.

Overall, I feel as though there isn’t much stigma associated with diabetes. It is a disease that ultimately will affect an individual over the course of their lifetime, and they need to be willing and able to handle the responsibility of controlling their diet and their activity level, as well as taking the appropriate medication, in order to remain healthy. I feel as though Matt deals with cultural stigmas, since people in his life are constantly worried that when he binge drinks, his blood sugar has the possibility of running so high that he could die or go into a coma. The biggest issue he faces results from the pressure from being in college to binge drink and party, which he struggles with, since it is what he wants to do, but it is not something that his body can allow him to do, since it can raise his blood sugar to the point where he could die. He is faced with the decision to decide whether or not societal pressures regarding the ability for college age students to drink, is worth him possibly loosing his life, or falling into a coma. Jen also faces the same thing, since all she has to do is watch her diet because she is pregnant and has developed diabetes while pregnant. While it is understandable that she is having a very difficult transition, she just has to watch what she eats, which she was given nutrition information to follow from her doctor. By not watching what she eats, not only is she endangering her life, but her unborn child’s life, creating potentially very dangerous situations.

Medically, these individuals are dealing with medical professionals quite a bit. Kristen, whom is working all the time in order to pay off her medical bills, is proof of how often she needs to see doctors in order to be healthy, and to order the equipment needed for her to take care of herself and to lead a healthy life, with diabetes. Matt has to see doctors because he has had diabetes since he was a teenager, and gets checkups. However, ever since he started drinking, he goes into diabetic seizures, which are not healthy for a person at all, and has led him to see more medical professionals for his disease, which warn him against binge drinking. Jen also sees lots of medical professionals, especially since she developed diabetes while pregnant. She continues to eat fast food and doesn’t eat the diet her doctors give her, which continues to make her disease worse to the point where she had to have labor induced, in order to not have any more harm come to her baby.

These individuals in the documentary have a difficult time accepting the sick role that always has played in their lives since they were diagnosed with diabetes, which is an illness that will never go away, and will progressively get worse without time. Kristen, while she tries to take the best care of herself, financially can’t afford the bills, and has to work excessive hours on no sleep, thus making her more unhealthy to fight her diabetes. Matt, while he has had diabetes for a long time, he almost feels invincible, as though he is able to handle the situation and nothing bad will happen to him, as long as he is able to give himself insulin while he is binge drinking, he will be fine. Jen, as well, continues to eat fast food, and bad food in general, which negatively affects her blood sugar, harming herself and her baby. Since they aren’t accepting or dealing with the situation properly, they are not taking care of themselves in the way that they should be, thus making themselves more sick.

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.