Chapter 2 Healing the Path of Uncertainty

Waiting for Health Care

Pain provoked deep concerns about health. Fevers and profuse sweating, pounding headaches that worsened each day, bruising in the legs accompanied by a rash, and coughing that persisted despite consuming home remedies were indicators that something was wrong. These symptoms and others prompted participants to seek medical attention within as few as three and as many as seven days. The discomfort associated with valley fever symptoms also concerns the CDC authorities who encourage residents to seek care immediately should these sensations persist for more than three days or worsen. Participants did exactly that.

Participants report seeking care from the hospitals and community clinics, making health insurance an issue of great importance. In seeking a medical evaluation, the availability of health care services produced constant frustration. Securing a doctor’s examination at a community clinic as a walk-in patient often meant having to wait anywhere from two to six hours. Participants were aware that without an appointment they were not guaranteed to meet with a physician and receive a diagnosis. Those who sought Emergency Room (ER) services at a hospital were keenly aware of having to wait similar long hours. Going to the ER meant that they would spend four to six hours waiting in the lobby, but a visit there might increase their chances of seeing a doctor, eventually, who could attempt to diagnose their symptoms and offer treatment.

The misdiagnosis of their condition on their first and sometimes second visit to a clinic or hospital compounded participants’ frustration. Almost all participants described having to make two or more trips to a clinic, hospital, or both, over the course of three to eight weeks before securing a proper diagnosis. Despite their efforts to address their painful symptoms, many participants could not secure a proper diagnosis on their first try as Tita’s experience illustrates.

Tita and I met through a mutual acquaintance from Arvin. Our interview took place in Tita’s home, a modern house on a cul-de-sac at the edge of Arvin. She welcomed me inside and offered a cup of coffee to warm up the conversation. Tita described her dreadful experiences with health authorities. After three days of a strong and relentless fever, she drove herself to the local clinic as a walk-in patient. She saw a doctor there but was sent home without a diagnosis or treatment; they simply asked her to go home and rest. The high fever remained for a few more days before she returned to the clinic again for help. Tita was tested for valley fever on her second trip to the clinic, but the results allegedly indicated that she did not have it. Desperate for answers, Tita called her medical doctor, Dr. Alvaro, in Guanajuato, Mexico. Her description of the symptoms and her general location in the state of California enabled Dr. Alvaro to diagnose her as suffering from valley fever. He mailed her injections to alleviate the cough and the pulmonary infection accompanying the high temperature but could not send the antifungal medication she needed because it was too costly. In a few days, the medicine to treat the symptoms arrived. After taking it, Tita waited a few more days for the medicine to take effect, but she was still in agony. Her condition prompted her partner to drive her to the county hospital emergency services forty minutes away on a Wednesday night. While there, doctors diagnosed her with pneumonia. She was given medication and sent home. By Sunday night, she was back at the hospital “rogándoles” (begging to be admitted) because she could no longer manage the pain. At the brink of what she described as a near death experience, the hospital officials diagnosed her with valley fever and admitted her for a stay that lasted for eight days.

Well, I was discharged, and I wasn’t coughing so much. I felt more or less good. We left, and we went to buy the medication. How much do you think the medicine cost? $600 per month. . . . I said, there’s no way. I don’t have insurance, I didn’t have insurance. So, we went to Costco and we would pay per day. We would get medicine for days at a time. And later, because the doctor who looked after me at the hospital was a private doctor and charged $220 per consultation, he said that if I went to see him and paid him the consultation that he would place me in a program for the company to donate the medicine for a couple of months. In the meantime, he would try to fit me into the county program. And now here I pay $74 and I get my medicine donated, and pay $24 for the other medications.

Landing in the system of treatment was difficult to achieve. Over the course of three to four weeks, involving three misdiagnoses and one international consultation, Tita finally secured the necessary treatment to begin healing. In the slow progression forward, the disease claimed a good portion of her health. While sitting around the coffee table, Tita pulled out a canvas bag that she carries with her daily. She jiggled the bag making the sound of a dozen maracas. It is half-full of medications to treat valley fever, and the additional illnesses she now suffers from, including diabetes, high cholesterol, and high blood pressure. Tita’s case illustrates the problems of misdiagnosis.

Misdiagnosis prolongs suffering, but it also shifts responsibility to the patients to advocate for themselves with whatever tools they might have at hand. For Tita, it was both calling a physician in Mexico, whom she trusted and who trusted her, and begging for admission into a U.S. hospital and advocating for an additional test for valley fever. Despite her various levels of self-empowerment, the external rules about who qualifies for health insurance hindered her access to lifesaving medications. The well-intentioned county programs that pay for the uninsured become inaccessible due to medical red tape while purporting to support an affordable recovery. Had the hospital physician not informed Tita that he could become her primary doctor and help her with enrolling in an indigent program to pay for treatment, Tita would have been left to resolve her illness with only the partial doses of antifungal medication that she could afford to buy for the day. Tita’s story could have become Mary’s story.

Medical red tape is a serious barrier even when doctors accurately diagnose patients. Clara’s case illustrates just how difficult entering a supportive system of treatment can be for people who are uninsured and unlikely to qualify for state subsidized health insurance. I met Clara at the swap meet during the first phase of recruiting participants for this study. She was shopping with three of her children and her partner who held her arm as she slowly walked through the dusty path. Clara agreed to a thirty-minute interview while her husband took the children shopping. After explaining that she currently suffered from valley fever, Clara also disclosed that the onset of the first symptoms occurred while she was pregnant. She was treating her valley fever infection with the help of the Emergency Medi-Cal health insurance program, which was the only health insurance she qualified for due to her U.S. pregnancy and her undocumented status at the time. After suffering a sudden miscarriage, she lost her unborn child, her health benefits. Clara explained that she had not taken any medication for over a month because she could no longer afford the medicine. She projected that it would cost her over $500 out of pocket for treatment. Meanwhile, Clara’s symptoms were slowly getting worse. In my field notes, I describe my search for public health options to help Clara on her quest to access medication.

Field Notes: I contacted the Department of Public Health. I explained to them that Clara was diagnosed with valley fever at a low-cost clinic. She did not have Emergency Medi-Cal insurance and did not qualify for health insurance. They first told me to call Fresno’s MIA (Medical Indigent Assistance) program, I was transferred there. When the person I spoke with heard that I was talking about a Kern County resident they gave me the number of Clinica Sierra Vista. I called Clinica and asked the phone receptionist if I could talk to someone about a person who needed help paying for valley fever medicine. They transferred me to “Jane.”  I’m not sure what Jane’s role is, but she knew of a clinic that would cover the costs. The only information they needed was proof of income. She told me that Clinica Sierra Vista provides discounts, but that the discounts were not significant for medication. She then put me on hold for about 3 minutes. I was given the name and number of someone else at a clinic in the city of McFarland, a rural community about 30 minutes away from Bakersfield. Jane’s instructions were to contact that person ahead of time and to explain to her the situation. According to Jane, the clinic there was offering to pay for medications even when patients did not qualify for insurance, no questions asked. I called Clara to give her the information about the clinic and the person to talk to before she made the journey.

The conversation I had with medical staff across different offices and different counties revealed the various loopholes patients must navigate to obtain medication. It also led me to ask more questions. Why would I need to call the Medical Indigent Assistance Program in Fresno County? Did Kern County have a similar program? Why can a clinic in McFarland help Clara but not one in Bakersfield? In our conversation over the phone, Clara and I talked through the process of getting help. A week later, Clara told me that she had called to confirm the potential support for treatment and that she had made the drive, but the clinic turned her away because they did not help families outside of McFarland. She returned to Bakersfield. No one could resolve her case. Despite connecting with several health care workers in various communities, receiving promising information, and having an active case and positive diagnosis, low-cost or reduced-cost medication was denied to Clara.

Situations like Clara’s and Tita’s are not unusual. Participants visit clinics two or three times before doctors identify and treat valley fever. Only a few participants describe receiving a correct diagnosis on their first visit to a physician. Patients who are undocumented and uninsurable struggle more to secure treatment, although most eventually find ways to pay for services. The programs offering to donate prescription drugs to patients were unknown to most participants until much later on their path to recovery. Thus, most participants experienced constant uncertainty about how they would recover. It was less clear how they would obtain the medication they so desperately needed.

Misdiagnosis is not just a problem of inaccuracy; it is also a question of value. A health care system that forces people who are sick to become self-advocates rather than serve them as part of a collective action undermines human dignity. The case of Champion drives this point home. Champion is a farmworker who earned his nickname because of his athletic abilities that gave him an advantage over his coworkers in cutting and packing grapes. He worked beyond the standards of the job. Our interview took place at his home in East Bakersfield. A wrought iron fence surrounded Champion’s home. The house windows were guarded with iron rods as well. In contrast to the outside scene, where three police vehicles across the street signaled incoming traffic to drive around them, the inside of Champion’s home was calm and serene. He invited me in and began his story by explaining that he suffered the classic symptoms of valley fever.

Champion had a cough, heavy sweat, and high fever that lasted for an entire week. He became ill with the symptoms while at work pruning grapes. By the fifth day of feeling ill, he made the decision to stop working in the middle of the day and drive himself to a low-cost clinic in Bakersfield because he could no longer manage the physical pain. While at the clinic, doctors told him that he was suffering from allergies. Champion went home and took the medication the clinic suggested. Allergy medicine turned out to be entirely unnecessary and ineffective at reducing his pain. He returned two weeks later to the same clinic explaining that he now suffered more acute pain. After being escorted to a patient room, he waited for two hours before a different doctor finally stepped in to see him. The doctor asked who had diagnosed him with valley fever. In agony and frustration with their service, Champion responded: “You have just diagnosed me doctor.” No one had informed him that he had valley fever or that he was supposed to take medication to treat it.

Long waits at health facilities coupled with the uncertainty of obtaining the right diagnosis produce a deep-felt distrust of the health care system itself. Luis, who lived down the street from Champion, described his ­decision-making strategy at the onset of symptoms as he scrambled for medical help: “I went to two [hospitals], to San Joaquin and the Kern ­General Hospital . . . because the last time I waited a long time to be seen by a doctor and over at the General Hospital, I waited a little bit less.” Waiting long hours to see a doctor prompted Luis to exit one hospital’s emergency room and seek care at another. This was not an unusual response to waiting. Noe, from Arvin, explains that during an appointment to drain the liquid accumulating in his brain from valley fever, he had no choice but to walk out of the operating room:

noe: Well, they gave me an appointment for ten in the morning. I arrived around eight and without eating. Well, they told me to come on an empty stomach. I didn’t eat in the house. When I arrived there, they didn’t give me anything to eat all day or in the night. The next day, “boom” I left and came home.

soledad (spouse): So, the doctor told him that he didn’t want to see him. “Do you know where I’m going to see you?” he said, “When you’re in the operating room, is when I’m going to see you.” 

After having waited over twenty-four hours without food or water, sick and in agony, and having not been seen by a nurse or health attendee, Soledad explains that the doctors expected Noe to ask for forgiveness before they would resume the surgery. No one tended to Noe’s needs or offered an explanation or acknowledgment that someone would come to relieve him of his agony and begin the surgery. They suggest that the overall medical process is very dissatisfying. Champion explains:  

I never liked [the clinic] because they would enter the room and say “why did you come? What are your symptoms? What do you have?” They would check everything and say “ok” and then leave. They didn’t give me an opportunity to, or they wouldn’t say anything like “how do you feel?” Or “this disease comes from [pause]. You need to do this or do that.” No. They just left. . . . No, there were no questions. Nor did they give me the opportunity to ask questions. I wanted to ask them something, but no, not even that.

In imitating the health professionals, Champion looked down at his palm as if he were carrying a clipboard. He did not look up until he was explaining what they had failed to communicate. He was emphasizing that no one bothered to really see him.

Traveling long distances for an accurate diagnosis and treatment can further complicate the process of healing. The participants living in rural communities describe scheduling their doctor and pharmacy appointments in distant cities such as in Bakersfield. In Arvin, there is no local hospital and only two health clinics to serve a population of more than twenty thousand residents. Many Arvin participants describe driving to Bakersfield. The cost of travel to see a doctor or to pick up prescription drugs at a pharmacy depended on who was driving. Neighbors and friends charged $20 for transportation to and from Bakersfield. Family members did not charge to transport their sick relatives, but they did have scheduling conflicts. The burden of distance means that the patients who live in cities or towns without hospitals, clinics, or pharmacies are less likely to spend their economic resources to secure access to a valley fever specialist or treatment at pharmacies. The path to recovery can often mean that residents face hidden financial costs. Making multiple trips across the county to access clinics or hospitals not otherwise available to them in their local community can accumulate into significant social and economic expenses that many cannot afford. These findings align closely with research about immigrants who depend on emergency room care and are unable to participate in “preventive” health care (L. Chavez, Flores, and Lopez-Garza 1992). Participants in this study reveal that few depend on health care resources at all, emergency or clinical, precisely because those available are so difficult to access. Red tape and differential processes for undocumented patients and patients with no insurance as well as clinics that exceed their maximum capacity to serve create experiences that punish immigrants and impede the process of recovery.

Beyond the financial costs, the prolonged waiting, misdiagnosed tests, and miscommunication make people feel unimportant, disrespected, and demoralized. Champion, Mary, Tita, Noe, and many other participants in this study expended considerable amounts of time, energy, and resources to obtain health care. Their experiences prompt one to wonder, What else is imperiled? What other challenges come from the uncertainty of recovery? Can the distrust of the medical system and the consequences of not obtaining health care cause farmworkers to be vulnerable in other ways?

Working toward Recovery

Most participants in this study described recovering from valley fever as a costly experience. Some participants related that laboring in the fields while suffering from the painful symptoms was the only available option they had at the time.

Luis illustrates the struggle between needing to rest and needing to work. Luis and Champion are neighbors and friends. When Luis became ill with valley fever, Champion instructed him about what he could do. He had done so in many ways already since Luis’s arrival from Mexico, but now, Champion became his health coach in response to a positive diagnosis. Unlike Champion, Luis’s undocumented status set him on a different recovery path. When I came to Luis’s home, a chain-link fence guarded the front screen door. Luis and his wife, Estella, welcomed me in for a talk. Unfinished cement flooring extended throughout the small living room, the kitchen, and into a private bedroom, where Estella was getting the children showered and ready for bed. A four-foot-high Virgen de San Juan portrait decorated the only wall separating the kitchen from the rest of the house. It was, in some ways, symbolic of the sense of faith he needed to get through these difficult moments. After being diagnosed with valley fever, Luis described the condition of needing to work even while still suffering from the painful symptoms.

I believe in the Virgen of San Juan. I prayed, and I asked her to heal me because I needed to work for my children. . . . I went to work, but I did not last very long and so, I left. Within 15 days from when I was diagnosed, I went to work sick, and I was taking the pills just as [the doctors] told me to do. But I did not feel well. I had this fever; I have never been through something like this. I have had a fever from the flu, and they eventually go away. This last time, the fever lasted for about three weeks. . . . I am not a person who walks out of work. I struggled but would make it through the day, even if I was the last one out. I barely finished one day. Because I was the driver, I told my friend, “Hey help me drive.” And when I sat down, I fell asleep. My body sweated and shook. My wife would tell me, “Do not go to work anymore, do not go, I will just go.” I said that I wanted to go. But she would say that I could not go. I finally understood and said fine. I stayed home sleeping. She would leave, and I would stay on the sofa sleeping. How she left me was how she would find me when she returned.

Like many participants, Luis knew that his body needed to rest. He felt exhausted, chilled, and had a lasting and strong fever. Yet, he returned to work only fifteen days after being diagnosed. He felt a sense of obligation to support his wife and their commitment to bring home a dual salary. Rest was a luxury he could not afford. Luis explained that taking a day off would mean dipping into their sparse savings, minimizing family expenses in both Bakersfield and Mexico, and letting go of their dreamed of projects. As an immigrant from Michoacán, Mexico, he sends remittances to his oldest son and mother. He plans to use his savings to reunite his son with his family in Bakersfield. Luis has no siblings or extended family. He does not qualify for disability benefits. Working while recovering was his best, if not only, option to keep his dreams alive and finances afloat.

Returning to work without one’s health goes against conventional knowledge about recovery. Healing from valley fever requires rest, drinking liquids, and taking the needed medication. But for farmworkers in this study, it is sometimes more logical to take a chance at recovering in the fields. Arturo described his reluctance to leave work until he “collapsed right there” in the fields due to the pain. Rodrigo described himself as “haciendo se el fuerte” (making himself strong) until he went to the hospital instead of work. Because not working could bring one’s family into devastating financial circumstances, the participants like Luis opted to do the only sure thing available to earn income for their family. Employers did not provide compensation for the workers’ days missed due to illness. The seasonal nature of farm labor meant that they were not guaranteed their job upon healing and returning to work. It was also unlikely that they could make up for the loss of time and money on a different date. Instead, the participants who left their jobs to recover described preparing to seek a different position at another company when they felt strong and able to do so.

Provider Communication and Farmworker Health 

For the participants who have authorization to work and who acquire valley fever, the communication between the health care providers and the worker is essential to securing an affordable recovery. Farmworkers are not making as many workers’ compensation claims as other workers do, even though they may be at higher risk of contracting valley fever than indoor employees. The compensation cases for employees in farming, fishing, forestry, and construction account for only 22 percent of the valley fever cases, while industries employing indoor workers in sales and office, service, management, and professional positions made 54 percent of the valley fever worker insurance claims (Das et al. 2012). Only one participant in this study was knowledgeable about the process of filing a claim for workers’ compensation insurance. Most participants knew only generally about the existence of worker insurance, disability, and unemployment rights.

When I asked Champion about how he managed to survive economically without his wages, he described asking his physician to sign workers’ compensation paperwork. He explained that he was well versed in the procedure needed to claim workers’ compensation insurance because he was trained by the UFW workshops about the benefits entitled to workers. When Champion became sick, he drew on this source of knowledge to help him through the need for income. Champion explains:

They have not awarded me my disability yet. . . . I do not know what the doctors are thinking. Around 15 days after (being diagnosed), they told me that they were going to give me disability. So, I told them to give me a letter that I could send [to the appropriate office]. After being admitted at the hospital, I went to a clinic, so they could give me the letter. After they gave me a form, they told me to fill it out and bring it back. I filled it out immediately. . . . I went back, and they told me to come by the next morning and that it would be done. I went and nothing. “Come on Monday or Tuesday” okay. I went. “Come Friday” okay, I went. Nothing. “We will call you when the form is ready.” Well, I had an appointment in 15 days. I went 15 days later, and they still did not have it ready. So, I asked them “what is going on? Look, I have more than one month without working. The law indicates that I have 45 days to send a claim. Those 45 days will come, and I will be left with nothing to claim, without benefits, with nothing.” One needs the money to pay the bills at least, right. . . . That day I was there with my appointment . . . “While you are here fill out these papers again.” And I asked, what about the one’s that I filled out already? “We cannot find them.” . . . They lost them. I sent the claim very late, and I still have no results.

Champion did his part to secure his workers’ compensation rights. He advocated for himself to health staff who routinely failed to meet his reasonable requests. At the time of our interview, Champion was still waiting to hear back from the disability office, but it is unlikely that he will receive any insurance. When health officials are unavailable or unresponsive to signing required paperwork for workers’ insurance or temporary disability, participants’ healing processes are hampered. A general lack of transparency about where to access workers’ compensation and disability forms and how to fill them out is a deterring factor. But so too are the clinics that do not prioritize a secure process to claim what are the insurance rights for California employees.

Rodrigo is another participant who is aware of his right to disability insurance. He describes an experience like Champion’s. Rodrigo waited nine months before he secured his benefits. Unlike Champion, Rodrigo’s doctor’s intervention was key to securing his claim:

The little bit of money that I had saved, well, I spent it little by little because I did not work. And at the end, I could not find an exit [to my financial problem]. So, then that is when I started asking [the doctor] to send me to work because my economic situation was bad. [The doctor] told me, “There is not any reason you should be going through a bad experience. You have always worked, right?” and I told him, yes. He said, “Disability should be giving you something reasonable, right?” and I said that I did not get disability. “Why not?” I said, no they asked me for many kinds of proof, and they did not believe me. “Really?” so he told me, “Why don’t you send the forms to me? Let me see, bring me the papers and I will personally send them.” They needed the signature of the doctor and all of that. And since I had been going to the doctor for some time because I was sick, I would send the proof but no [one ever approved my case]. They denied me [disability]. So, then the doctor took it upon himself to send the papers. When the doctor sent them, then they began sending me disability [payments].

In sum, over the course of seeing his physician for nine months, Rodrigo submitted paperwork on his own; however, he was unsuccessful. He had no choice but to resort to returning to work. Rodrigo requested that his doctor allow him to go back to the fields despite his condition. Communicating his situation with the physician opened the possibility for him to obtain disability insurance.

Others who were unaware of how to submit formal claims did not receive benefits at all, despite having paid into state treasuries for such rights. Jose from Arvin explains:

I wanted to fill out the papers [for disability] and I needed the doctor to sign them. I did not know how to fill them out, so I did not send them. Because when you go to the doctor due to an injury, you are supposed to take all those insurance papers with you. But when you go to get the papers filled out, they say “no, well you fill out the papers, and I will turn them in, so the doctor can sign them.” I never took them in because I did not know how to fill them out and I did not even know where to get those papers.

Even when participants entered the social safety net system they pay into from their wages, such as Social Security Disability Insurance, unemployment payments, or workers’ compensation insurance, most still faced a significant financial struggle. Noe, for example, was in his eighth year of receiving valley fever treatment, but he only qualified for six months of disability insurance. Since then, his wife, Soledad, has become the breadwinner. Noe’s children now pay for some of the medication costs, while extended family members who come to visit frequently donate a couple of hundred dollars to the family when they can.

The consequences of an unsupportive social safety net can result in accruing debt. Margarita described her brother’s financial challenges during the time that he had valley fever:

He was at the point of losing his house, but thank God, he was able to recuperate it. . . . They made an agreement [with the lender] and they are still there. . . . But he is very much very in debt because he started covering his bills with credit cards. He would ask here and pay there, and that’s how he got by.

Luis explained the substantial loan he obtained and his difficulty paying it back even after four years had passed.

We had a little money in the bank, and we lost it paying the bills and all of that. I obtained loaned money. I went to a program called Progreso Financiero that loans money to people who work in the fields. . . . I asked for $1,600. . . . Right now, I owe about $450 still.

Arturo described his losses:

I lost it all and still, look at me, I am still recovering. Thank God, I am working right now. . . . My friend, this man, if it were not for him who knows what would have happened. He helped me get Medi-Cal and food stamps. And still, it was not enough. I lost my house.

Rodrigo describes how his coworkers collected money to help him:

Well, I spent everything that I had saved in all my life. . . . Since I was a supervisor, various “cuadrillas” [cohorts] cooperated. And they gave me, they helped me. Well, they gathered a little something. I was very grateful. It was not much, but either way the action, which is what counts. . . . Every year [the company] gives the workers a dinner and they receive $3000 to make the food but they brought it to me. I did not want to accept the money. And the group said that they did not want the food; that they wanted to help me, and they all helped. What is more! I was able to overcome this because my family also helped me. In other words, that is why I was able to overcome this, because they all helped me. If they had not helped me, God only knows what would have happened.

While farmworkers’ legal residency status plays a key role in meeting the requirements for social safety nets, workers are more often denied rather than granted access to the social insurances they pay into. A qualifying medical condition does not guarantee farmworkers’ access to public safety nets. Conversely, people with the authority to qualify an injured worker can fail them and their condition. At the same time, public safety nets are not designed to be quite enough for a reasonable minimum standard of living. Farmworkers find their strength to heal by reaching deep and wide into networks of kinship that range from neighbors, coworkers, spouses, and children to distant relatives for support. Many workers lose their savings, acquired over extended periods of time, in a short time span. The path to recovery from valley fever is set up so that every person partakes in their individual agency to heal. Farm workers hang on to self-determination, even if it costs them physical and financial sacrifices.

The Gendered Dimensions of Disease and Wellness

Like many heteronormative unions, the farm working families are embedded in hegemonic gender norms. When valley fever strikes, the gendered and family responsibilities are rearranged. Women as partners are charged with a disproportionate weight in shaping the path to healing. I interviewed women whose partners acquired valley fever, and they described their endless caregiving. They detailed long work shifts with their employers and then coming home to a domestic sphere with enormous responsibilities that their previously healthy partners shared. Soledad describes her burden while caring for her partner who suffers from a prolonged case of valley fever. “The people, thank God, the people would tell me, ‘You can do it Soledad. You eat if he does not want to eat. You need to eat because you are the one who is suffering.’ And yes, because when you have someone who is sick in the house, everyone is suffering, not just that sick person.” The conditions that stressed Soledad included her partner’s reduced appetite and lessened interest in food, lack of physical movement, and sometimes depression. Additionally, there was the added financial burden of her sole paycheck. Soledad continues to work in the agricultural fields. When Noe stopped working, Soledad stretched her income to cover the household expenses. She reports that they did not have food to eat at various times, they negotiated their rent payments, and they eliminated other expenditures. Although their extreme circumstance was alleviated eventually, they depended on the collective efforts of family members to make ends meet. Their daughter, Sofia, now helps the family by regularly taking Noe to doctor’s appointments and arranging to pick up medical treatments in the city of Lamont. Sofia also takes care of her own children in the house while her partner works. Soledad’s older sons help pay for medication with their combined salaries.

Women whose partners contract valley fever shoulder a multitude of responsibilities. They are at once caretakers, breadwinners, and mothers. The roles women take on provide hidden subsidies to the health care system. As workers, women earn money to pay for housing, utilities, and meals. They wake up early to pack their own lunches and make food for the rest of the family. They return home after eight to ten hours of work. As caretakers, they must monitor the symptoms, like fevers and rashes, administer doses of medication, bathe their partners, tend to their bowel movements, change the patients’ clothing, talk with physicians, ask for translation, and seek medical advice. Women organize transportation to and from the various doctors’ appointments and pharmacies. As mothers, they take their children to and from school, arrange for babysitters, provide meals at home, and, when possible, help their children with learning. These physical and mental tasks require emotional expenditures at every step. No medical professional assists them during these trying times at home, even for personal counseling. The help women receive, if any, comes from kinship network volunteers who step up when possible.

The female partners who contracted valley fever express concerns about the collateral consequences of serious illnesses that extend beyond financial and physical duress. Isabel described experiencing a moment of panic. She suddenly remembered the tragic outcome of her friend who had died from the same disease years before. Isabel did not want this tragedy to happen to her own family. Isabel explained:

They were a family of six children. The husband worked in construction. Do you know what we used to call that family? The “happy family” because they were always happy; they had a good attitude, and whatever event we had, they were there. That family fell apart. The husband was the one who sustained the family financially. The wife worked in the fields. Her boys were young then. At this moment, I can tell you that the older two boys are ruined. They are roaming the streets now. The girls, it looks like one of them [pause], I heard that the wife re-married and [the new husband] sexually abused one of the girls. I have videos of that family when they were with us celebrating. And the family fell apart as a consequence of that valley fever. The wife with her farmworker wages, with five children, lived in a trailer near the mall. So, do you think that she was going to be able to sustain her children with a wage of that kind? When the husband died, she did not receive help from anyone. And since she did not have papers, she did not qualify for help; not even for the children because they were not from here. All the children were born in Mexico. So, the lady returned to Mexico.

For Isabel, valley fever meant a disintegration of family, and children potentially moving toward delinquency. The circumstances that happened to the “happy family” may be unusual, but their example was profound and resonated with Isabel’s concerns for her own family. Both men and women interviewed were acutely aware of the possibility of death from valley fever and the grave consequences for the whole family. Yet Isabel’s concerns came through the lens of a mother and worker who provides for her family. In her darkest moments, she worried about how valley fever would render her family vulnerable to insecurity, instability, and death.

Discussion

Mary, Clara, Champion, Luis, Noe, Rodrigo, Soledad, Isabel, and many others’ experiences illustrate that the actual costs of valley fever extend beyond paying for the exorbitant price of treatment, therapies, and diagnosis. There are additional physical, mental, and emotional costs that stem from medical miscommunication, misdiagnosis, and mistreatment. Red tape further exacerbates the underlying medical racism and the bureaucratic workings of a health system that holds no one accountable. The participants are expected to single-handedly secure their well-being, to be individually responsible for managing the web of health offices and insurance providers, medical clinics, pharmacies, and debt collectors. Routine waiting with likely misdiagnoses does not just complicate vulnerable lives, it requires more visits and out-of-pocket costs, resulting in patients becoming physically and emotionally drained. This suffering is collective and cumulative.

The hidden costs of valley fever tax precious and limited resources. They place workers into a downward spiral of further vulnerability. Even when women take on multiple caretaking burdens, such as breadwinner, mother, and health care provider, these are not enough to sustain a family during a short- or long-term disease. Without sufficient and effective support in highly endemic counties, farm working families face circumstances of displacement. Rodrigo’s expression “no vamos aguantar” (we are not going to hang on much longer) best fits here.

Farmworkers enter the system of health care through a process of uncertainty that would be considered unreasonable and cruel if it were faced by privileged classes but is commonly shared among farmworkers who are relegated to the undesirable margins of health care. Signs of uncertainty show up at every step of the path to healing, and no one really knows what to expect. For example, people are forced to wait for treatment, adjust acquired medications, subject themselves to risks that endanger their health and the health of others, and temporarily ignore their own needs to help others embark on a path to recovery. One’s agency manifests itself not only by choosing to embark on the path to treatment but also by creatively and critically navigating the uncertainty.

Mindy Thompson Fullilove’s (2013) concept of “the feeling of un-­expectancy,” which is used to explain how interruption and uncertainty shape the lives of inner-city immigrant and nonwhite residents, describes how the state’s disinvestment in the neighborhoods of poor and vulnerable groups has left residents few options except to maneuver through unpredictable sites replete with danger and violence. The interruptions to daily life and the constant surge of new problems inform the ways in which residents try to protect and shelter themselves. They guide how residents relate to one another, which is often shaped by the social dysfunctions stemming from external economic and political processes, such as unemployment and the hypercriminalizing practices. Various political processes that permanently mark farmworkers as “unauthorized” contribute to the experience of daily repression (Macias-Rojas 2017). Ana Y. Ramos-Zayas (2006) describes the condition of “delinquent citizenship,” where, despite of one’s immigration status, people are subjected to the “global penalties” and harsh treatment meted out to illegal residents (28). The anti-immigrant rhetoric and the policies it shapes in the United States have long undermined farm labor laws and continue to undermine public health. The historical allegations against immigrants, as characterized by “ignorance, filth, indolence, and criminality,” disseminated by twentieth-century health authorities and their systems of care, were characteristically committed to limiting and withholding health care for the nonwhite immigrant population in urban and rural settlements, as well as in labor camps (Ngai 2004, 53). The racial order of wellness that emerged because of it lingers today despite advancements and secured public commitments to marginalized residents and their health. We see it when the participants cannot secure the insurance benefits they pay for, when they are denied a proper diagnosis, and when they lack dignified care as patients of the neoliberal medical industry. The touted advances in public health contrast sharply with the burdens that nonwhite farmworkers face. What does it mean when the defects of health care require female spouses to take on multiple unpaid roles? For neighbors to have to coach and guide patients through care? For coworkers to organize monetary collections to support their fallen peers? I offer here an alternative perspective to the biomedical frames that define valley fever as a public health crisis that is limited to individual actions. Instead, the collective degradation experienced by differently situated Latinx farmworkers in Kern County calls for a social ecological approach that treats health care as a human right rather than as an artificially scarce commodity to be rationed out unfairly and unjustly.