The Illness Narrative

Gabriela* expresses the notion that she has encountered the professional health sector more than an average person would. When she was diagnosed with Spinabifida Type III at Mayo Clinic in 2002, her journey through the medical system reached a peak moment of understanding. Her memories and experiences start before this diagnosis, however. The vast number of these serve as prime examples of western ideas of the body, Cartesian dualism, the differing roles of medicine, and the use medical authority that is dominant in western medical discourse. Through doctor-patient interactions, use of medications, and her own thoughts and attitudes, these concepts can be employed to understand the culture of western medicine at large.

This narrative begins at Gabriela’s home, in Algonquin, Illinois. It is the end of November, in the year 2000, and Gabriela is 39 years old. Six weeks ago, she has given birth to her third child, a beautiful baby girl, Jamie. Gabriela is still in the hurried and exhausted state of having a newborn child, when her life takes a massive turn, for the worse. On this day, in November, she is going about her routine as normal. She has just put Jamie down for a nap, and is finally able to use the bathroom. While in there, she remembered that she “felt something different, felt like something was coming out of [her]”. Upon further self-inspection with a mirror, she found that something was coming out of her. Gabriela decided to go to her obstetrics and gynecology (OB-GYN) specialist, Dr. Gee. He informs her that her bladder has prolapsed, and reassures her this is a common occurrence in some women who have recently given birth. He continues on to tell her that the cause is generally unknown; however, and Gabriela learns that there may be a genetic disposition to it. She agrees with the doctor, since her mother’s bladder also prolapsed and required surgery to fix it. Even to this day, she does not fully understand why it happens to some women and does not happen to others.

Dr. Gee suggests to Gabriela that she have a total hysterectomy, to take her uterus out, because he felt that her uterus was the cause of the increased pressure on her bladder, thus forcing it down. Even though Gabriela did not plan to have more children, she did not believe that a hysterectomy was called for, and wanted to seek out a second opinion. She decided to see a different specialist this time. She sought out a urogynecologist, essentially “somebody who specialized in both”. When she met with Dr. Louis, he suggested a laparoscopy instead of a hysterectomy. A laparoscopy, he told her, should be an uncomplicated procedure, but some testing would be needed. Thus, the testing was completed. An ultrasound tested the functionality of her bladder, and when everything checked out they proceeded with the surgery in November of 2001.

It is important to understand that Gabriela’s background served her well in the beginning of her journey. These procedure names did not necessarily intimidate her, which can be attributed to her childhood and employment history. She grew up the daughter of a nurse, her sister went on to become a doctor, and Gabriela herself was an X-ray technician for several years. Hearing medical terminology had become almost a second nature to her, even in her somewhat-removed family life and changed occupation (she had moved to Chicago to become a flight attendant). In her mind, until November of 2001, every medical problem or issue that had arisen had been taken care of, and so this surgery was simply the fix needed to mend her broken system.

This way of thinking – the body as a machine – is specific to western medicine and its culture. The notion that the problem must be identified, named, and then fixed based on that identification is a slippery slope that western medicine has created, as it is “argued that thinking about the body in mechanical terms has contributed to the dehumanization of clinical practice” (Joralemon: 2010:4). While some may speak against this, and object that there is still humanity in medical practice, that is not entirely the point. It is not just in the doctor-patient interactions that this problem manifests. It is also in the discourse provided by the medical community when “we speak of the heart as a pump and viruses as invading forces attacking the body’s defense system” (Joralemon, 2010:4). This discourse feeds into the body-as-machine line of thought, which carries over into and dominates western medical culture.

Gabriela went in for her “uncomplicated” surgery, and was told she may be in some discomfort afterwards. However, when she came out of surgery, the pain she felt far exceeded “some discomfort.” She remembers that from her waist down felt “on fire, like pins and needles; [she] had never felt so much pain in [her] entire life.” She admits that this was her first surgery, and so at first she thought it might be normal. As the minutes turned into hours, and her pain remained at excruciating levels, she knew something was wrong. She was told during surgery preparations that after 24-48 hours, her pain would subside and she would be able to return home, but after two days, she still found herself “pressing her pain pump looking for more pain medication, writhing around in bed, and swearing like a truck driver.” Her doctors and nurses were confused; they figured the pain was all in her head, and considered sending her to the psych ward. Instead, they kept her for five days instead of the typical two, with “uncontrolled pain” listed as the primary complaint.

After the fifth day, she was sent home because the doctors did not know what else to do for her. To the doctors, the surgery was successful, and Gabriela should have been experiencing an uncomplicated recovery. She felt that it was her fault, somehow. This might have been due to the attitudes she faced from the medical authorities around her. She recalls that she honestly felt as if they viewed her as drug-seeking, due to the fact that they did no further testing when she presented very complicated symptoms after surgery. Instead, they changed her pain medication (never giving her a higher dosage, only lowering it). It was clearly upsetting for her to remember the “looks and the attitudes,” because in her words, “it was terrible.”

In Gabriela’s case, it would appear that the doctors began to employ their medical authority by insisting that they knew best and the patient knew nothing. The fact that these doctors considered sending Gabriela to the psych ward before running more tests speaks to the Cartesian dualism of mind and body. Since the surgery was deemed successful and her body looked in tact, clearly the problem had to be in her mind, and that issue had to be solved using different methods. This doctor-patient interaction highlights that “in the encounters between medical specialists and patients, it is possible to see enacted the power and authority of biomedical knowledge” (Joralemon, 2010:21). These specialists, under the assumption that they understand the body of their patient better than the patient does, make decisions on behalf of the patient. In this case, it seemed as if Gabriela had no choice but to trust the doctor and head home.

Once home, Gabriela could barely get out of bed. She was miserable. She called the doctor’s office twice, telling them that she felt something was not right. They assured her that she had a follow-up appointment scheduled in another week, and that she could come in and discuss it then. When she finally spiked a fever, she decided to take herself to the local emergency room. At this point in her post-operation process, she had a suprapubic catheter (one that was inserted inside of her body after surgery) that she would drain and change every so often. When she arrived at the emergency room, they determined she had developed a bladder infection, and gave her synthetic morphine. She, in turn, had an allergic reaction, which prompted the emergency room to send her back to the hospital that she originally received her surgery at. While in the ambulance (alone, her husband at home to watch her three young children), her blood pressure started to drop. She thought to herself that she might die. She arrived at the next hospital, and they scheduled a CT scan for the morning. When those results came in, everything changed.

She first remembers everyone’s attitudes around her changing. This was when she knew that something “was very, very wrong.” At the same time, she felt a wave of relief to know that she “wasn’t crazy.” The doctor who came in to talk to her, Dr. Orwen, told her that “it’s going to be okay, honey. You have a mass in your spine, and we’re not quite sure what it is.” Dr. Orwen assured her they were going to do more tests and she was going to meet with Dr. Nelle. Upon meeting Dr. Nelle, she was informed that it was an arachnoid cyst (collection of spinal fluid, cells, and collagen on her spine) but it wasn’t the cause of the problem. This was the first time that she felt confused and began questioning, wanting to know what that was and how he knew it wasn’t the source of the problem. After being told one thing and having it turn out to be another too many times, she began to see through the complex superiority of medical authorities.

She remembers that he was so sure of himself, even though the diagnosis didn’t fit. Although she was beginning to question, she still went with the diagnosis, was given orders to begin to take herself off of the catheter, and go home. In trying to do so, she found that she could not urinate on her own. Once again, she felt there was something wrong with her, because what was happening to her did not line up with what the doctor told her was going to happen. She remembers thinking, “I can’t do what they are telling me to do, what am I doing wrong.” When she calls again to tell them she is having trouble, they tell her to drink water. She felt belittled, as if she didn’t know how to make herself urinate. She would get so frustrated that she was in tears, “it was mentally, emotionally horrifying to ‘follow doctor’s orders’ but my body was not cooperating.” Even still, she felt responsible for “not doing the right thing.”

This line of thinking employed by Gabriela is one directly caused by the culture of western medicine. Since the ‘nature’ of illness is supposed to be separate from morality, one would assume that illness does not choose its host based on any particular criteria. However, “as we learn more of the mechanisms of disease, responsibility for being sick is shifting to the individual, who through will, reason and healthy ‘lifestyle’ should be able to prevent it” (Gordon, 1998:28). This discourse has become more popular in medical culture recently, and has shifted the blame of illness onto the individual, rather than anyone else. This authority that doctors holds can influence the confidence people have in themselves. Even the popular phrase “doctor’s orders” adds to the discourse that biomedicine is truth. Rather than acknowledging that Gabriela was properly following orders and that something was wrong, medical authorities continued to treat her as a ‘condition’ (i.e. not being able to urinate) and focused instead on fixing that problem.

When it was finally established that Gabriela was not a normal case, she was referred to Mayo Clinic in Minnesota. Mayo Clinic is rated as the #1 overall hospital in the United States, and specializes in urology, gynecology, and neurology; all of these areas were concerned with Gabriela’s case. It was here that she would receive her final (on this body part) and correct diagnosis; Spinabifida Type III. It was the second case Mayo Clinic had ever seen by the year 2002, and she would make two more trips after her initial one in order to finalize the diagnosis. Upon learning that she would have to catheterize herself for the rest of her life, there was a mass on her spine (that if surgically removed, could leave her paralyzed), and that she was going to wake up in pain from permanent nerve damage every day for the rest of her life, Gabriela felt overwhelmed. She felt frustrated. She felt depressed, anxious, and constantly on the verge of a nervous breakdown.

She began to see six different doctors at once, and was eventually put on eighteen different medications. She could barely get out of bed most days, found daily chores to be exhausting, and could no longer function in her day to day life. She lost touch with friends, either because it was too exhausting to keep up with them or because they faded away due to the stigma of her being “sick.” Every doctor she saw seemed to only treated the part of her body in their realm of specialization, and as a result she never felt whole. Every time she walked into her psychiatrist’s office, she would vent, and she was given more medication. She carried around a list of all of her medications to every doctor’s appointment, because she claimed that if she didn’t, “no one would have asked.” She was now in charge of her own care, under the disguise of being cared for by the medical community.

The issues that plagued Gabriela post-diagnosis are ones that are found far too often in western medical culture. Treating the body as different “parts” that need to be “fixed”, rather than treating the person as a whole. This goes hand-in-hand with the medical gaze employed by doctors, where they see the patient as a “case” or a “condition”. In turn, people become “docile bodies,” bodies that are shaped by the system they are in. Looking back, Gabriela recalls that she “became a body part” in the process of seeing different doctors for different areas of her body. Because of the way medical authorities treated her body, Gabriela found her vision of her body mirroring that of theirs. In biomedical culture, the body becomes a ‘thing’, and “as a ‘thing,’ the body is neither a person nor something sacred (‘a thou’), but run by mechanisms and best approached objectively through the purest and most objective of languages – numbers” (Gordon, 1988:30). Being wrapped up in the western medical culture, Gabriela found her body being viewed just like that, a ‘thing,’ to be measured and objectified until brought back to health.

This detachment took an emotional toll on Gabriela. Finding herself constantly frustrated, overwhelmed, and empty, she found it difficult to grapple with the fact that she was aware of this change in her sense of her body. She was fully aware that she was being treated like a machine, a thing, an object – however, there was nothing she could do about it. She was in pain, so she needed treatment. She was depressed, so she needed treatment. She had a grocery list of diagnoses at this point, which included blood clots, sleep disorders, and masses in her spine and brain – all of which needed to be tended to. While she found herself questioning the methods, she was also left with no other choice, considering she could barely function on her own as it was. Biomedical culture tends to “offer a strong sense that humans can overcome nature, no longer a victim, but in the omnipotent driver’s seat” (Gordon, 1988:40). This was not the case for Gabriela. She felt she was losing control of herself, of her functionality, because of the treatment that she was being offered. It would seem some of her later diagnoses (such as sleep apnea, which was solved when she was no longer on life-threatening doses of painkillers) would be considered “iatrogenic diseases, those caused by the very process of treatment” (Joralemon, 2010:76). This suggestion falls in line with the radical claim that overall, medical care in North America has actually had a negative impact on health, rather than a positive one.

The comment that sticks with Gabriela the most came from her neurologist one day in an appointment. He told her, “you’re an enigma.” She laughed with him at the time, not fully understanding the weight of what was just said to her. Later on, she found herself “appalled that a doctor had said that to his patient.” This highlights many critiques “focused on the relationship between the patient and physician in a medical system increasingly devoted to technology and highly specialized experts. Among the accusations were that doctors were losing any personal connection to their patients” (Joralemon, 2010:76). Through interactions with her doctors, being prescribed medication, and dealing with illness in multiple folds of her life, Gabriela was reduced to a machine that had parts that could be fixed individually, rather than as a person who could be treated as a whole. This can be attributed to western medical culture, “the distancing from everyday understandings that naturalism encourages contributes to the distance between physicians and patients” (Gordon, 1998:32). Until this paradigm is shifted, these problems will remain. It seems as though the problem is being recognized, as there are “articles [that] demonstrate the concern and awareness medical educators have regarding the widespread perception of physicians as lacking in the ability to treat their patients as whole persons” (Davenport, 2000:313). While this is a great start, it would appear that more needs to be done.

*Names have been changed

References

Beverly Ann Davenport. 2000. "Witnessing and the Medical Gaze: How Medical Students Learn to See at a Free Clinic for the Homeless." Medical Anthropology Quarterly 14(3):310-327 (http://www.jstor.org/stable/649501). doi: 10.1525/maq.2000.14.3.310.

Joralemon, Donald. 2010. Exploring Medical Anthropology. Boston [u.a.]: Prentice Hall.

Lock, Margaret, and Deborah Gordon. 1988. Biomedicine Examined.Dordrecht: Springer Netherlands.