Different cultural upbringings can determine a person’s illness experience. The relationship between the experience of a patient, and in turn, a course of treatment is inherently valuable to document. To understand an instance of this dynamic, I interviewed Maria, a Los Angeles resident, and a forty-year-old Hispanic, low-income, single mother with six children who is a devout Christian belonging to the church Iglesia Universal. Throughout our interviews together, she often recanted her illness experience as fluid between medical and spiritual avenues, and later on, a much more spiritual explanatory model. What follows is primarily the narratives through which she described her medical experience.
Maria is an outspoken person who is strong in her faith. This was evident by her welcoming demeanor and constant near-excitement in expressing her religious beliefs. For example, upon beginning my interview, I asked a few questions to warm up, such as “How are you doing?” and “What is new?” Her responses showcased health, while accolades and accomplishments from herself and children were immediately followed by saying, “Praise God.” When expressing more difficult updates, she said, “It’s up to God.” I mention this because it is significant to understand her religious attitudes towards her illness experience.
Maria grew up in a Catholic home with her mother who emigrated from Guatemala. Growing up, faith was always central to their lives. She and her mother went to church regularly and for most of her childhood remained Catholic until she was thirteen. Maria had succumbed to an ear infection which impaired her hearing. Western medicine would not improve her state, much less cure her. Her mother found a church—Iglesia Universal—to help Maria. The pastors prayed over her, and she states her hearing began to improve until it eventually completely healed. This was the turning point in religion for Maria and illness treatment with relation to faith.
In late 2018, Maria became pregnant with her sixth child. Throughout her pregnancy, she experienced night terrors, insomnia, trouble breathing, pain, and discomfort. She often went a day without sleeping, only sleeping a couple hours because she would have night terrors, or she had trouble breathing. The following is an excerpt from our interview:
Maria: I did not sleep, or at least not good. I literally had to go to the beach to sleep. I had the kids put on their sweaters and blankets and we went to the beach in 50-degree weather. [laughs]
Me: Did you go every day?
Me: Throughout your pregnancy?
Maria: Practically. Or I would sleep in the hospital.
Me: Why did you sleep in the hospital?
Maria: I don’t know. I guess it’s because I knew if something went wrong, I’m already at a hospital? I felt safe because they were already monitoring my heart.
Me: What about the beach? Why did you sleep there?
Maria: I was able to breathe there. When I tried to sleep at home, I would be suffocating. It was like [starts gasping as demonstration] type of suffocating. I wasn’t able to sleep for more than ten minutes. I would have to sleep in the living room with all the windows open on the beach chair [Anthony] bought.
She had gone to the doctor recurrently because of her symptoms, along with a fear that something may be wrong with the baby. She had been to multiple hospitals: Saint Francis Medical Center, Martin Luther King, Jr. Community Hospital, UCLA Medical Center, and California Hospital Medical Center. Each one wrote it off as a combination of panic attacks, anxiety, age, and once, thyroid.
Unable to get a diagnosis, or one she agreed with, and with no relief for her symptoms (she does not recall getting medication), she began to believe her illness could have been spiritual. Although she was going to the hospital and church asynchronously, she started relying on church for relief, or some sort of explanation for her illness. The pastor of her church told her she was having symptoms because she was a victim of witchcraft. He concluded this by praying over her. Subsequently, her body reacted to his prayer. She began crying, shaking, and feeling weak and nauseous. This diagnosis made sense to her as she recalled the start of her symptoms.
Before she couldn’t sleep at all; she was only able to do so at 4am and it was consistent for two weeks before it became nearly impossible without feeling suffocated, scared, and anxious. She described this as ‘weird,’ presumably because of the accuracy. Because of this she asked the pastor to pray over her home. She asserted that she would attend church almost every day. Around this time as well, her father’s widow was fighting over the assets which her father left. Selfishly so, this widow was attempting to claim all the assets. Maria believed her dad’s widow may be behind the witchcraft, or even from an unknown place. She was certain that witchcraft was involved.
Fast-forward to the day she had the baby. She was experiencing extreme sleep deprivation and told herself if she couldn’t sleep, she’d go straight to the hospital. She prayed and asked for rest. Once it was clear she would not be able to sleep, she immediately went to the hospital. Upon arrival, she was intubated, and the doctors informed her they’d have to do an emergency C-section because she was having heart failure.
Once she woke up from surgery, the director of the hospital asked why she hadn’t disclosed she was having chest pain in her previous hospital visits (as shown in her medical history) and why no one had diagnosed her. Since she was intubated and could not talk, she wrote on a whiteboard, “no one listened to me.” Maria was unclear regarding the timing of events around which this was occurring, but she expressed that she had gotten worse, and at some point that she believed (even before entering the hospital) she was meant to die that day.
Maria: I called the pastor when I was about to go to C-section because I was scared. And when I came out, I told my mom to call [the pastor]. I wrote it down and gave it to her. I felt like my body and soul were detaching. My body was letting go. I can’t explain it. My soul was detaching. I don’t know. In my mind, I wanted [the pastor] to come to give me a blessing because if I couldn’t save my body, I’d at least save my soul. The pastor came with determination though and started rebuking the demons and told me ‘Tomorrow in the morning they’re ganna remove you from the tubes and they’re ganna sit you down in this chair. Do you believe?’ I shook my head. I kid you not, when the pastor left… 15 minutes after, a nurse came and the whole atmosphere in the room changed. The nurse looked at me and said I’m breathing on my own.
Here, we can further unpack the many factors behind Maria’s illness experience. She respected both her doctors’ and pastor’s explanations in the sense that she found validity to their assessments. However, it is clear that once the doctors could not figure out what was wrong with her, she gravitated more strongly towards belief in a spiritual attack. At the end, she expressed knowing her experience was spiritual because the director of St Francis Medical Center declared an unfamiliarity to her case; something which he hadn’t seen before, even though she later received a diagnosis of pulmonary edema. When Maria recanted this experience, she said: “You can’t see spiritual,” in reference to the director not knowing what was wrong with her. Therefore, she believed, it was caused by something undetectable to the medical gaze.
There were two explanatory models in Maria’s illness experience, being witchcraft and the diagnosis of pulmonary edema. Both of these models were conducive to her treatment plan, however also influenced by structural violence through the failure of medical care. In the beginning, Maria expresses asynchronously going to church and the hospital. It doesn’t seem like she was swayed to a particular explanatory model, but only took them both into consideration. However, faith was rooted in even her medical explanatory model—that is, she didn’t separate the relationship between God and her doctors. To her, God had his reasons for the failure of care she received. At the same time however, that failure of care led her to believe her illness experience was spiritual.
Maria fell victim to the medicalization and clinical gaze by her doctors. Being on Medicaid, Hispanic, and a woman may have all been factors to the dismissive nature of her care. Doctors wrote her off as having psychological issues rather than physical. However, as it was later determined, her psychological issues were caused by her physical ones. Since her vitals seemed normal with every hospital visit, no further tests were taken, and thus doctors were unable to diagnose her correctly in the beginning of her pregnancy, despite her medical history. Because of the lack of physical evidence, her psychological experiences did not fit the clinical gaze.
We can view clinical gaze and medicalization as being correlated to racialized, class-based structural violence. The standard medical view, in which medicalization and the clinical gaze are entities of, does not provide adequate individualization and holistic views of an illness experience for a patient like Maria. This standardization of medical care generalizes extremely different groups of people who all have vastly different illness experiences. Maria seems to be a victim of this as well.
Maria found solace in her church and her faith because it brought her some relief (going to church and praying), especially after being turned away by many hospitals and doctors. To her, witchcraft was why doctors couldn’t find anything and continuously send her home.
I wonder however, if doctors did not turn her away, would that have changed her illness experience? Would witchcraft have been the presumed cause of her illness? Or vice versa, if her church couldn’t help her, despite doctors turning her away, would she have pursued medical help more strongly?
Much of the meaning she placed in her illness stemmed from narrative thinking. With more information, her explanatory model changed. This was extremely evident once she sought her church more and her pastor said she was a victim of witchcraft. She then recalled her timed sleeping schedules and eventually its progression. She also thought about her recent family issues and their motives, and even the environmental changes once the pastor left the room. Overall, her illness experience was underlain by a complex interplay of medicalized structural violence, narrative thinking, and clinical/spiritual explanatory models. Through Maria’s story, we are reminded of the necessity behind understanding the complex cultural background of a patient seeking medical care.