For this project, you will interview someone who has either 1) experienced an illness or other medical event (broadly defin

Medical Anthropology, UCI Illness narrative student sample

Union of Biomedicine and Religion: An Understanding of an Illness Experience

Phil is a young man who thrives off of physical activity. This has been the norm for him

ever since he was young. Throughout the years, he has avidly been involved in basketball, tennis,

hiking, and biking. His time spent exercising is an opportunity to de-stress, spend time with

friends, and re-balance his life. Unfortunately, this vital component of his character was taken

away from him at a very critical time in his life.

Phil was finishing the final year of his undergraduate career and was amidst the nerve-

wracking process of applying to medical school when he decided to take a quick break from

studying to play basketball. During a pick-up game, he was running down the court when he

decided to jump up for a layup. While in air, another player bumped him in an attempt to halt his

shot. As a result, his body weight was thrown off balance, and he did not land properly on his left

foot. He experienced a twisting motion in his left knee and heard a pop, after which he felt a

sharp pain for five minutes. Phil wasn't too concerned at the time; with a history of experiencing

a slew of minor ankle sprains and knee bumps over the years, he was no stranger to sports

injuries.

He limped home to his apartment and waited until the next morning, hoping his knee

would feel better as it had many times before. However, the next morning, the knee was bruised,

swollen, and more painful. He thought it could be serious so he called his father — a doctor — and

sent him pictures. His father suggested he may have torn a ligament. As result, Phil came home

from his college to be further assessed by one of his father's colleagues, who was an orthopedic

surgeon. The doctor drained excess fluid from his knee. The fluid showed a high amount of

blood, further suggesting a ligament may have been torn.

Medical Anthropology, UCI Illness narrative student sample

Phil then returned to his college, where he used his university health insurance to get an

MRI of his knee, which confirmed a tear of the anterior cruciate ligament (ACL). The moment

he learned of his ACL tear, Phil was disappointed and disheartened because he knew his mobility

would be limited for some time.

Phil scheduled his reconstructive surgery as soon as possible because he wanted to get

back on his feet. Following his surgery, he had to follow a strict regimen of physical therapy for

three days per week with physical therapists and three days on his own, with limited mobility

during this time. He was expected to do about two hours of physical therapy per day. The total

time for him to recover completely was nine months.

The Sick Role and Effect on Social Relationships

The injury was very difficult for Phil because when it happened, he was taking summer

classes to finish his degree and applying to medical school at the same time. He was expected to

continue to excel in his classes and finish his medical school applications, all while being limited

in mobility and spending extra time on physical therapy. He had to take a wheelchair to class for

some time, and the university staff helped him with this. However, he did not enjoy the attention

this brought towards him, which made it slightly embarrassing. It made it difficult to focus in

class and on his medical school applications.

People in situations like Phil's are often excused from their societal responsibilities for a

period of time to recover. Talcott Parsons, an American sociologist, termed the sick role to mean

a "sanctioned" form of deviance in which patients have the right to be exempt from social norms

until recovery. However, when Phil suffered his injury, he was actually denied the sick role, in

that he was not excused from his day-to-day duties as a college student and medical school

Medical Anthropology, UCI Illness narrative student sample

applicant. Even though he was brought to class in a wheelchair, he was still expected to finish his

courses in time to attain his degree and apply for medical school. Perhaps this denial of the sick

role highlights a larger problem within our competitive and sometimes unforgiving culture in

colleges and universities.

In addition to denial of the sick role, for Phil, the most significant consequence of the

injury was the lack of time to socialize and have fun through sports. His social relationships

were, therefore, significantly impacted by his ailment. Phil's situation shows the distinction

between illness and disease. A strictly Western biomedical disease perspective would consider

Phil's ailment only in terms of the observed conditions in the body — a tear of the anterior

cruciate ligament. However, the illness perspective recognizes the lived experience of the

symptoms and suffering from the patient's viewpoint. For Phil, his illness was not simply a torn

ligament, but rather a lack of social relationships and relaxation time that helped him keep

balance in his life.

Healthcare Inequalities

During Phil's recovery after surgery, he had sessions with a professional physical

therapist in order to re-gain strength in his knee. This service was provided through his

undergraduate university's health insurance. However, after he graduated, Phil lost his university

health insurance and was not able to go see his physical therapist. This factor affected the quality

of his recovery. Phil's lack of health insurance was not an issue of biomedical pathogens, but

rather a product of his socio-cultural and economic context. Therefore, this shows that we must

understand disease in not only the biomedical, individualistic view, but rather we must also

consider the larger context within which the illness is being experienced. The biomedical tenet of

Medical Anthropology, UCI Illness narrative student sample

individualism says that disease is a condition that affects an individual and should be treated as

such. But rather, there are more factors to consider, such as an individual's access to healthcare in

his or her socio-economic position.

Encounters with Biomedicine

Although Phil's ACL injury is healed now, he does often sprain his ankle while playing

basketball, which gives him a nagging pain. Phil had done research on this problem and had

started doing particular exercises to strengthen his ankle. He went to see his doctor to ask if there

was anything else he could do to improve his ankle or if there was perhaps a more serious issue

underneath causing the problem. However, Phil felt that the doctor dismissed what he was asking

for, since the doctor simply repeated what he had already heard in the past. The doctor didn't take

a sincere interest in his illness experience, but rather followed a strictly biomedical model by

addressing the injury without understanding or acknowledging Phil's concerns and feelings as a

patient.

Explanatory Models

Coming from a family of doctors and healthcare professionals, Phil understands his

sports injuries largely through the lens of Western biomedicine, in that he believes in the

materialistic view that his injuries can be observed through signs in the body. But for his ACL

injury, a biomedical explanation wasn't enough, and he turned to his religious beliefs to help

explain why the injury happened to him. Phil comes from a conservative Hindu household and

believes in the 'Swaminarayan' sect of Hinduism. In this sect, they believe that one is constantly

reborn after death, and that each life's pain and suffering as well as material happiness is dictated

Medical Anthropology, UCI Illness narrative student sample

by the balance of sins and good deeds one did in previous lives, known as 'karma'. He believes

that major medical problems like his ACL tear are a result of 'karma.' While he firmly believes in

this religious outlook, he does not think about his day-to-day, mundane pains as products of

karma. But when a major event such as his ACL tear comes around, he finds it easier to

understand and explain it with his religious ideology. This helps him find a bright side to his

injury — at least his pain and suffering happened for the noble reason that he was atoning for sins

he had done previously.

Biomedicine is based on an assumption of naturalism, which deems illness as amoral and

non-discriminatory. Phil's notion of 'karma' fills the gap left by the assumption of naturalism, in

explaining why and how his injury happened. Essentially, Phil's religious beliefs help him place

his experience with this medical event into a larger context and meaning in life.

Conclusion

After nine months of physical therapy, Phil was finally able to regain strength in his knee

to return to his normal physical activity and restore balance in his life. He is now a medical

student, and as an aspiring doctor, he does not believe that medicine/science and religion/faith

are mutually exclusive. For him, religion is simply the explanation of why science works.

Overall, his outlook on his ACL injury is a union between biomedicine and traditional Hindu

values.

Medical Anthropology Illness narrative student sample

Beautifully and Wonderfully Made

December 21, 2013, is the anniversary of a day that Paige can’t remember. In fact, she

can’t remember a full two weeks after this day, as she was in a medically induced slumber.

Concerned family watched as she lay in isolation, hallucinating and tossing and turning, her

blood count plummeting. Today, she enthusiastically announces this day as her “re-birthday.”

Paige, 52, her husband, and her three adult daughters live in Hemet, California. She

addresses her family’s illnesses with a holistic attitude, viewing diet, exercise, and spirituality as

having as much healing potential as pharmaceutical drugs. She values doctors who share this

perspective, yet who are also aggressive and candid. Her approach to medicine reflects a union

between the Western biomedical model and the growing trend of favoring natural and organic

remedies seen among the upper/middle-class public. Until the summer of 2008, she was

unaware of just how much these professional qualities would mean to her.

Summer was vacation time when Paige worked at a local public school. Yet, as a self-

described “Type A personality,” she liked to keep herself busy with other activities. However,

Paige soon became aware that she was unusually tired and requested a blood test from her

doctor. The results came back that she was intensely anemic. She was given a prescription and

changed her diet to include iron-rich foods.

By July, she had developed a painful lump on the back of her right knee, which was

diagnosed as a torn muscle. But the lump was still there when school started in August. While

supervising a detention class, Paige stood up from her seat, heard a popping noise, and

collapsed to the ground. By the time a student had gotten help, her knee had swollen to three

times its original size. Managing the pain long enough to wait for a friend to drive her to the

hospital, Paige received an MRI and a leg brace on the assumption that she had torn her ACL.

Two days later, she received a phone call from her doctor requesting an immediate

appointment. He would even keep the office open late until Paige and her husband were

Medical Anthropology Illness narrative student sample

available. It just had to be that day. That night, they were told that the MRI revealed

deterioration in the bones of her knees. Taken with her anemia, these were signs of bone

cancer.

Two weeks after a referral to a hematologist and a bone marrow biopsy, she was

diagnosed with myelofibrosis with pernicious anemia, a serious and rare bone marrow cancer.

The hematologist explained to her that the bone marrow is like a blood factory, and Paige’s was

so scarred that it wasn’t producing any. Her body was a machine with a broken part. An

abnormal blood-producing stem cell had multiplied and replaced the bone marrow with scar

tissue. Paige’s illness, the simple experiences of lethargy and a swollen knee, had become an

alarming, life-threatening disease.

At the time, the only thing Paige and her doctors could do was treat the symptoms. She

was given steroids and medications for the pain and swelling. She had to quit exercising, a

practice she enjoyed and valued holistically as an element of health, because the pain was too

acute. Her anemia kept her constantly tired. Other symptoms arose. Her spleen began to swell–

it had taken on the job of producing blood. Because her spleen was preoccupied, Paige’s body

couldn’t fight off infection as well and she was prescribed more medication to counter this.

Despite the drugs, she developed severe mouth infections and her teeth began to fall out as the

bones decayed. Today, only about six of her teeth are real. She was dissatisfied with her

treatment and was disappointed that her doctors not only wouldn’t consider, but were dismissive

of alternative treatments, such as diet changes to improve her quality of life. Throughout these

trials, Paige continued to work, as accustomed to the busyness as she was.

In 2012, an experimental new chemotherapeutic “miracle” drug was approved by the

FDA, called ruxolitinib (trade name Jakafi). There were high-risk side effects, including extreme

anemia. Given she was already anemic, this gave Paige pause. But within a few weeks, she

had improved. She had more energy, was less achy, and her spleen had shrunk. But this

reprieve didn’t last long.

Medical Anthropology Illness narrative student sample

Three months later, Paige needed her first blood transfusion. She had begun to feel

unwell again and her blood count had plunged, but this new procedure was frightening to her. It

was unfamiliar and it meant that her treatment wasn’t working. Soon the transfusions would

become commonplace; she would need another one about once every month for the next

eighteen months. And the transfusions came with their own set of problems. This new blood

was 90% synthetic, causing her liver to swell and her iron (ferritin) levels to soar. A healthy

person’s ferritin level is under 200 ng/mL– Paige’s was at 5,000 ng/mL. Her skin took on a

yellow tinge and she was prescribed another drug, this one called XJ, to remove the excess

ferritin. It took a toll on her work life when, every day after her morning dose, she had to remain

in the bathroom for several hours, passing the ferritin.

Paige’s body was like a gas tank, only stuck at half-full. This was how her doctors

explained it to her. She was a machine perpetually needing fuel. The Jakafi she took daily to

cure her, depleted her “tank” to empty and the transfusions could only bring her back to half-full.

This iatrogenic paradox of the medicine making her sick was part of Paige’s life for eighteen

months and early on it forced her to finally make the decision to leave work. She had to use her

“fuel” wisely, and she wanted to spend it on her family.

All of a sudden, Paige had a lot more time on her hands. What time wasn’t spent

sleeping, was spent with her family or God. As Christians, the family grew closer together as

they looked to their God, in addition to therapy, for comfort and solutions. Family and friends

supported and took care of Paige through these difficult months. Paige wasn’t scared, though,

because she trusted God. After spending time strengthening her faith, she asked Him, “God, will

you heal me? I’m tired now. I don’t want this anymore.” It was then that Paige believes that she

began the journey back to health.

Her oncologist at City of Hope recommended her for a stem cell transplant. Within

weeks she had an astonishing four perfect bone marrow matches. Six months later, almost two

years after starting Jakafi, she was checked into the hospital for the procedure. Five days of

Medical Anthropology Illness narrative student sample

chemotherapy to kill her cancerous bone marrow cells, which were then replaced with the

healthy cells of a forty-year-old male donor. One hundred and thirty five days of isolation after

December 21, 2013, a bone marrow biopsy declared her 100% free of cancer.

Now, Paige has been in complete remission for very nearly a year and a half. She is

Relay for Life’s “Hero of Hope”; she gives speeches with the hope of inspiring, providing

information, and helping others. Her disease has made her view illness in a more positive light.

She believes taking on the sick role is an opportunity to re-prioritize and to better understand

life. Paige tells her story often. Her explanatory model is half science, half faith. Is it the placebo

effect– simple optimism– that allowed her to advocate for herself, drive the events of her

treatment forward, and heal? Or something bigger? The connection between mind and body

can be just as real as Paige’s God. While her disease was idiopathic, she talks about its cause

biologically, making no reference to “God’s plan” as the root. She was cured with science, but

only through God’s help. Where her doctors discussed her body as a broken machine, she was

able to find her personhood in her religious faith. She may be a machine, but she is one that is

“beautifully and wonderfully made.”