It was a terrible moment when I realized I was no longer hearing my children when they called me, I could not understand what they were asking. I did not want to see anyone anymore. A hearing specialist told me that the only solution to hear again is a very expensive implant. This disease leads to loss of hearing, family breakdown, loss of friends, and loss of work. In my job, communication is very important. I wonder how I will raise my children if I can no longer work. How can I take them to the sea? I can barely go shopping or to the park in this state. At this moment, my husband and I do not know each other, we are like two strangers.” Maria Virginia Ianosi (Dolj County, Romania).
It is well known that tuberculosis (TB) damages the physical body. TB disease usually afflicts the lungs, creating scarring and holes in them that interfere with a person’s ability to breathe. Less known is the fact that the body is inevitably damaged by one or more of the many side effects of TB drugs. What is even less recognized, including among doctors, is that this multi-layered damage often lasts long after a person is cured and may be irreversible.
In this article I will discuss hearing loss and other sequelae (aftereffects of a disease or injury) caused by tuberculosis and its treatment and experienced by people in Romania. I argue that these harms change TB survivors’ sense of self, and that, because of how treatment is organized, medical providers, who deem them “cured” may not know about their sequelae or their struggles to return to their former lives.
This article is based on long-term ethnographic fieldwork that took place in Romania mainly between 2009 and 2016 at several hospitals and clinics. This fieldwork included survey and interview methodologies, as well as participant observation, which entailed accompanying medical staff on rounds and living at a TB sanatorium for six months. The long duration of the fieldwork allowed me to see how a person experiences the entire trajectory of their illness, including its progression long after they leave the view of the medical system.
TB Disease and Treatment
When we think of adverse reactions to medications, we typically assume that they are rare. The label of any prescription drug is usually full of possible side effects, but most people do not experience them. For people with drug-resistant TB, it is entirely different. For most, it is not a question of whether they will suffer from adverse reactions, but rather, when and from which ones out of a long list of terrible physical and psychological side effects – irreversible hearing and vison loss, tinnitus, liver, kidney and cardiac complications, permanent nerve damage, anxiety, depression, paranoia, suicidal thoughts etc.- that only add to the debilitating symptoms of TB disease itself, such as holes and scarring in the lungs.
In Romania, the organization of TB treatment itself can also be devastating, as it involves long periods of hospitalization, usually at least a month for people with drug-susceptible TB, and anywhere from six months to several years for patients with drug-resistant TB. There is little benefit to these long periods of inpatient treatment but they do serious damage by removing people from their social support networks and by preventing them from working and thus from providing for their families. Interviews with patients made clear these social and economic tolls of long hospitalization. It kept many of them far away from their family and friends, a distance which parents and grandparents felt most acutely as they missed their (grand)children, who needed their care. The economic situation of the vast majority of my interviewees had already been difficult before they contracted TB, as they had struggled to pay their bills, and, in many cases, even to heat their homes and feed their children, but hospitalization deepened this hardship and made them desperate to go back to work.
A Second Life?
Given this multi-layered damage caused by TB disease and treatment, and especially the fact that, during the years of my research, it was far more common for people to die than to be cured of DR-TB (in some years, cure rates were as low as 16-20%, and among the lowest anywhere in the world), it is no wonder that, when Romanians did beat the odds and managed to get cured of DR-TB, they often described it as starting a “second life.”
However, what many did not realize until after they returned home “cured” was that they were no longer the same. Their “second life” came with unexpected challenges, chief among them being their sequelae from TB disease and treatment, which can be serious and completely change a person’s life. For example, damage to one’s lungs can make it impossible to perform physically demanding work such as in construction or agriculture and may require one to use supplemental oxygen for the rest of one’s life. The industrial and construction workers who had prided themselves on their ability to lift heavy pieces of iron and stone now suffered from lung damage that left them out of breath even while walking up and down stairs. Bakers found that they could no longer tolerate the heat of the ovens.
Hearing loss, which is caused by injectable antibiotics such as streptomycin, kanamycin, amikacin, and capreomycin, might not be noticed by patients until they had difficulty hearing people talking to them, by which time this loss would already be serious. Worse still, because regular hearing tests, which are required throughout treatment with these medicines, were rarely, if ever, done in Romania (as in many other countries), hearing loss might come as a complete surprise to many people, who were unaware that it was even a possibility., Furthermore, because the drug accumulates in the ear fluid and persists even after the medication is stopped, one’s hearing loss can continue well after one has stopped taking the medicine.
This long-lasting side effect was experienced by many people. Cristian contracted DR-TB when he was a young man in his 20’s pursuing a university degree in engineering. He had to drop out and began a course of treatment which would last 2-3 years, and which included injectable antibiotics. Because of the danger of hearing loss associated with these drugs, his hearing should have been tested at the start of treatment and then every month. He did not receive these tests. Instead, he noticed that he was not able to hear people as he once did.
Cristian was eventually cured of his TB thanks to drugs purchased online through donations (these drugs were officially unavailable in Romania). However, upon his return to university, he found that he could not hear his instructors and had to drop out again because Romanian universities do not have disability accommodations and because a hearing aid could not address his problem. His dream of becoming an engineer ended. He then took several retail and service jobs but, like many TB survivors specialized in public-facing work, he had trouble hearing customers and was unable to keep these jobs. He felt disconnected from the world and worried about his chance of finding someone to love him—not as who he once was, but as who he was now. In just a few short years, Cristian went from a healthy university student to a shadow of himself.
Maria had a similar experience to Cristian’s, both from a professional and social perspective. Her hearing loss prevented her from working as a seamstress, as she needed to be able to hear her clients, and, tragically, from communicating with her children.
Sociologist Erving Goffman describes stigma as coming from traits that are deeply discrediting, such as having (survived) certain diseases, including TB. Medical anthropologist and psychiatrist Arthur Kleinman argues that conditions that threaten what matters most in a society will be stigmatized, and that the stigmatizers and those who suffer from the stigma are interconnected in complex ways. In Romania, TB was historically called “a disease that does not forgive” (o boală care nu iartă ) because it threatened one’s ability to work and took the lives of many people and their whole families. Despite effective treatments globally in use today (though one’s chances of survival from DR-TB vary dramatically depending on where one lives) and the fact that TB is an airborne disease that can infect anyone, TB is still incorrectly seen by many in Romania to be a disease of the poor, the Roma, or those who consume too much alcohol. Research participants told me that they went to great lengths to hide their TB diagnosis from employers, friends, neighbors, and sometimes even their own family for fear that they would be rejected or shunned.
Disabilities of all kinds are also stigmatized in Romania, and there are few supports for people who have them. Specifically, hearing loss threatens what matters most because it can take away one’s ability to get an education, to work, and to communicate with friends and family. All of these are important values in Romanian society.
People like Cristian experienced the multi-layered effects of stigma caused by both their TB and their hearing loss. Cristian eventually quit his retail jobs because he did not want to reveal his hearing loss and history of TB to his supervisors. Hearing loss, particularly, threatened not only his identity as a worker, but also as a student and future family man.
Importantly, while certain conditions and statuses carry stigma for everyone affected, people who are already socially vulnerable are disproportionally harmed by them. Things such as wealth, social status, and strong social support networks can insulate one from this harm whereas one who is already socially vulnerable due to poverty and a lack of family support is more likely to experience stigma. The same argument can be made for Romanians suffering from TB and its aftereffects. Both TB and disabilities threaten Romanian cultural expectations for men and women. Many have written about the internal stigma that women in many parts of the world experience in relation to their inability to fulfill cultural expectations of motherhood., The consequences of TB and its treatment can engender a similar internal stigma. In interviews, both men and women with TB expressed concerns over their ability to have children and/or to care for the children that they had. As Maria’s example suggests, women who suffered from hearing loss found themselves forced to even relearn how to communicate with their children upon their return home.
Some men expressed a desire to start a family while those who already had families felt a strong expectation to financially provide for them. However, the work options for those experiencing hearing loss and diminished lung capacity were greatly limited, excluding many types of work that had been commonly performed by male patients, such as construction, industrial, agricultural, and informal day (cu ziua) labor.
Absence of Support for TB Patients and Survivors
Despite all of these problems stemming from TB disease and treatment, the medical, socio-economic, and psychological support needed for people to reintegrate in society was generally unavailable during my research due to budget and staffing constraints.
These constraints precluded the accessibility of hearing testing and aids, cochlear implants, and lip reading and sign language instruction for people who had lost their hearing. Similarly, there were no supports for people who had experienced a loss of lung function, such as job retraining and portable oxygen machines.
During most of my research, the majority of people with TB lacked psychological support entirely. The only exceptions were two Global-Fund-supported DR-TB treatment centers in Bucharest and Piatra Neamț. Each had one psychologist who faced the impossible task of supporting forty or more patients. In later years, the Romanian MDR-TB Patients’ Association (ASPTMR) would provide peer support via telephone and referrals to psychologists for a limited number of patients, and more psychologists would be hired nationwide. However, the need is still great.
Out of the View of Doctors
In many cases, a person’s doctor may not even know that they are suffering from these issues. The fact that Romanian doctors have to work under impossible circumstances, where even required diagnostics and antibiotics are sometimes not available, explains why they are often solely focused on the difficult task of curing the infection. Another explanation is that, after a person completes the inpatient phase of their treatment, they undergo the outpatient phase in their home community, where they receive treatment at a local clinic or through self-administration (common in rural areas) and may not be monitored for hearing loss and other adverse reactions. For instance, because so many TB survivors like Cristian self-diagnose their hearing loss, the frequency of this sequela is under-reported. This may result in both patients and medical staff not fully appreciating the danger of it. Therefore, if blame is to be laid, it should be directed not at the doctors, nurses, psychologists, and other staff, who do their best for people with TB, but at the systemic failure that ensures that Romania’s TB program was and continues to be under-resourced, lacking the necessary staff, stuff, space, systems, and support.
There are global and national interventions meant to address the negative effects of TB illness and treatment. Research has been done showing that, of the four injectables in use globally, two have not only been causing hearing loss, but have also failed to improve cure rates. This spurred South Africa to update their national guidelines in favor of an all-oral regimen of better tolerated drugs. Similarly, by 2018, the World Health Organization had deprioritized the injectables and, by 2020, had updated its guidelines, only recommending the use of these drugs in people without other options and if drug susceptibility tests show that they will be effective for the patient. While some countries have continued using these drugs (including Romania for a time), the approach to treating DR-TB has changed globally, with Romanian TB survivors playing an important role in this change. The suffering and economic costs at the individual and national levels caused by creating hearing loss are massive, but people like Maria and Cristian may be the last generation of TB survivors to endure this disability.
Removing the stigma that TB carries in Romania will take a long time, but it is a work in progress. In the mid-2000’s, when I began researching TB in Romania, patient organizations barely existed, and few TB survivors would publicly reveal that they had had the disease. Over time, thanks to NGO’s such as Romania’s MDR-TB Patients’ Association (ASPTMR), strengthened through local and donor support and through their connections to international NGO’s such as STOP TB and TB Europe Coalition, it became more common to see Romanian TB survivors in the media helping dispel myths about the disease and showing that it was curable. In contrast, the stigma associated with disability, particularly hearing loss, will be much harder to confront, given the lack of support for and integration of people with disabilities of all kinds in Romania. Furthermore, because advocacy tends to focus on single diseases or disabilities, it may be difficult for TB survivors with multiple sequelae to find all the support and belonging they need. They may also find themselves excluded from certain forms of support due to their history with TB, a stigmatized disease.
People greatly need support both during and after TB treatment to ensure that they are not only cured but also remain as physically and mentally healthy as possible. Medical support includes consistent monitoring of drug side effects. Socio-economic support can take a variety of forms, such as transportation reimbursement, pensions, and job retraining. Successful peer support projects such as those run by the MDR-TB Patients’ Association could be expanded and combined with other forms of psychological support.
There are no happy endings. Cristian and Maria beat TB, but their struggle continues. Once the harm is done, it cannot be undone. However, the worst effects of TB and its treatment can be mitigated through medical, socioeconomic, and psychological support to ensure that the damage to a person’s physical body and sense of self is minimized. Future generations of people with TB do not have to suffer the same.
My sincere appreciation goes to the people with TB and to the medical staff who shared their lives with me and who made this work possible. Special thanks to Ilinca Diaconu-Stillo for her support and editing assistance. All of the opinions and errors contained in this article are my own.