Introduction

Among metaphors for social stigma is “the mark of Cain”, which carries profound meaning in some cultures. The mark of Cain metaphor originated in the story of Cain and Abel in the Book of Genesis (King James Bible, 1769/2008). God punished Cain for murdering his brother but marked him so if someone harmed Cain, the damage would come back sevenfold. Some interpretations view this as a physical facial mark, whereas other interpretations see the “mark” as a social sign, and not as a physical mark on Cain himself. The mark of Cain, a strong symbol within the Judeo-Christian culture, emerged as one powerful metaphor in our current study of stigma among survivors of COVID-19 (Kaplan, 2019).

The literature on stigma in medical sociology addresses the stigmatization of people with disabilities (Rubeis & Steger, 2019; Sabatello, 2018), chronic or mentally ill patients (Azlan et al., 2020; Oexle & Corrigan, 2018; Woo et al., 2021) and minority groups (Cheng et al., 2013; Horowitz et al., 2017). Link and Phelan (2001, p. 363) defined stigma as “the co-occurrence of labeling, stereotyping, separation, status loss, and discrimination in a context in which power is exercised.” Stigma has a significant influence on many aspects of a person’s life such as social relationships, coping mechanisms, stress, and access to resources. It incorporates elements including other-ing (Logie & Turan, 2020), labeling, stereotyping, prejudice, and discrimination (Corrigan & Penn, 1999). Stigma poses a barrier to “health seeking behavior,” including looking for and receiving care, and adherence to treatment across a wide range of conditions (Lan et al., 2018; Stangl et al., 2019; Stringer & Baker, 2018). Studies have consistently found that stigma is associated with harmful health outcomes (Budenz et al., 2020; Budhwani & De, 2019; Pachankis et al., 2018). Additionally, it fuels social and health inequalities (Hatzenbuehler et al., 2013).

While stigmatization is often studied in medical settings where the stigma is associated with stable, existing conditions, such as disability or chronic illness, this study broadens the scope of stigma analysis and explores a dynamic form of stigmatization during the early days of the current epidemics. The COVID-19 pandemic provided an opportunity to investigate the emergence of and ongoing stigmatization of COVID-19 patients. Specifically, we were intrigued by the fact that although in the early stages of the pandemic the vulnerability to COVID-19 was perceived as universal (before vaccinations were introduced) it was stigmatization rather than a shared feeling of vulnerability that prevailed in the attitudes toward COVID-19 patients during the initial stages of the pandemic outbreak.

The current COVID-19 stigmatization has been driven by three main factors according to the World Health Organization (WHO et al., 2020). First, it is a new disease about which much still remains uncertain. Second, it is common to be afraid of the unknown, which leads to the third factor: a sense of fear of “others.” These three factors induce confusion and anxiety among the public, given the media hyperbole leading to the creation of harmful stereotypes. Stigma can undermine social cohesion and encourage social exclusion, which may contribute to a situation in which the virus spreads further as people are afraid to be tested, making it more difficult to control outbreaks of the disease.

Moreover, during the COVID-19 pandemic, many acts arising from stigmatization came to light around the world, involving patients, doctors, healthcare administrators and survivors. In late January 2020, when the COVID-19 pandemic was still primarily confined to China, verbal, and physical attacks against Chinese persons or people of Asian descent were documented in many countries. In Italy, for example, many racist and violent acts took place (Muzzi, 2020). There were cases of people refusing service to Asians in shops and restaurants, and in the United States, during one week in March, 650 racist acts were reported against Asian Americans according to one news source (Yoshiko, 2020). While not based necessarily on racist discrimination, recovered patients also faced stigma, especially from neighbors. Given the shortage of test kits and laboratories, it was not always possible to test recovered patients to determine if they had recovered and were disease free. This led to social avoidance and isolation due to others’ fear of being infected. Bagcchi (2020) reports several incidents involving stigma surrounding COVID-19. Doctors, nurses, and healthcare workers from Malawi, Mexico, and India were reportedly denied access to public transport, physically assaulted, and evicted from rented homes. Similarly, COVID-19 patients also suffered from stigma associated with the virus. For example, a woman in India was abandoned by her family after giving birth to her child and testing positive for the virus. Another striking example took place in Harare, Zimbabwe, where the street in front of a recovered patient’s house was named “Corona Road,” and neighbors avoided using that road for fear of getting infected (Bagcchi, 2020).

As with other diseases the substantial stigma related to COVID-19 derives from a combination of fear, uncertainty, misunderstanding, and incorrect information surrounding the virus (Abuhammad et al., 2021; Islam et al., 2021). Most countries had difficulties preventing stigma attached to the COVID-19 pandemic. The role of stigma and discrimination in spreading the infection has been emphasized (Smith & Hughes, 2014). Stigma swayed sick people to hide their symptoms in an attempt to avoid exclusion, and lied to their employers or schools to prevent being blocked from working or gaining access to schools and universities to study (Jahangir et al., 2022). This behavior enabled the spread of infectious pathogens, especially among those suffering from mild symptoms who avoided seeking medical attention and continued with their routines so as not to raise suspicion regarding their true, contagious condition (Quinn et al., 2014). In addition, such behavior contributed to the deterioration of clinical situations and likely had psychological consequences (French et al., 2022). On the other hand, patients with a diagnosis of COVID-19 often suffered from anxiety and depression, mainly due to hospitalization or home quarantine, or because of guilt toward family members or acquaintances (Rong et al., 2020; Villa et al., 2020). Overall, there is a growing body of research documenting how national and regional effects of stigma regarding COVID-19 impacted the physical and emotional wellness of people (Abuhammad et al., 2021; Islam et al., 2021). It is clear that the stress surrounding COVID-19 may have had a considerable impact on those affected.

In this study, we focus on the stigmatization experiences of recovered patients who were infected during the first COVID-19 wave.. Although generally COVID-19 is not a chronic condition (even though people can experience “long- COVID-19” symptoms, Perlis et al. (2022)), it is accompanied by guilt, shame, and social sanctions both in the infection stage and in the post-recovery period not dissimilar to diseases with high social stigma. The objective of this study was to gain deeper insights into and expand the knowledge about the stigma surrounding the COVID-19 pandemic using personal narratives to examine feelings of shame, guilt, and discrimination caused while interacting with the society.

Methods

Participants

We conducted a prospective, qualitative interview study of individuals recovering from COVID-19 manifested during the first wave of the pandemic’s outbreak in Israel to addresses the phenomenon of the stigmatization of individuals. The participants were 20 COVID-19 recovered patients sampled using a combined purposeful and snowball sampling approach common to qualitative research (see Table 1). In the purposeful sampling, the interviewees were selected based on their potential sources of rich information to support the study objectives. In addition, we asked the interviewees to approach their friends and acquaintances who met the inclusion criteria, and to ask if they were prepared to be interviewed.

Table 1 Interviewee Characteristics
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The subject of bearing a stigma and experiencing feelings of guilt and shame after contracting the disease was often raised spontaneously during interviews, emerging as a significant theme. Based on the personal stories, we examined how these experiences made them feel and how they dealt with the social environment’s attitude toward them and their family.

The inclusion criteria included: adult, Hebrew speaking, COVID-19 recovered patients for whom six weeks had elapsed since receiving notification of leaving isolation; and recovered patients who had suffered from severe symptoms/required hospitalization.

The exclusion criteria included: patients with suppressed immunity (e.g., cancer patients, patients with organ implants), because they may feel stigma and shame due to their condition, beyond being infected with COVID-19.

Ethics approval was obtained from Ashkelon Academic College Ethics Committee (Approval #25-2020). Informed consent was obtained before each interview. We sent the interviewees the informed consent form before the interview via WhatsApp or email according to their request; the forms were signed and sent back to us. The nature of the study and its objectives was explained to the interviewees, and they were asked to sign a consent form to participate in the study and to be audio recorded.

Procedure

We located potential interviewees in the Facebook group, “The First Official Forum in Israel for COVID-19 Patients and Recovered Patients.” We published a short announcement in the Facebook group regarding the study, its objectives, and the inclusion criteria, together with our phone numbers. Eight recovered patients contacted us and expressed their willingness to be interviewed. Three of these met the criteria and were interviewed. We read posts that were published, and from these, we tried to locate those cases that met the inclusion criteria. We initiated contact with 13 recovered patients via a private chat posted on Facebook. We introduced ourselves and presented the study objectives and asked if they were prepared to be interviewed. Five agreed to be interviewed, four did not respond and four did not meet the inclusion criteria. One interviewee changed his mind and canceled the interview out of concern about being identified. We reached five of the interviewees via the snowball method based on the recommendations of other interviewees. They approached friends who met the inclusion criteria and asked them if they would be prepared to be interviewed. All five agreed to be interviewed. In addition, we approached individuals we knew, and they in turn contacted friends who had been ill and who met the inclusion criteria and asked them if they would be prepared to be interviewed. We received the details of 12 recovered patients who agreed to be interviewed. One of these did not meet the inclusion criteria and was excluded, while two others changed their minds and canceled the interviews as they did not want to be reminded of this difficult period.

All twenty interviewees were very eager to share what they had undergone. Some of them were motivated to help others understand just what it means “to be ill with COVID-19,” and thereby convince them to be careful and adhere to the isolation and masking rules. Some participated enthusiastically in order to process what they had been through and to understand the sources of strength that had helped them contend with the disease. Others regarded the interview as a form of “therapeutic” intervention, in which they could share their experiences with others who did not know them, and would listen without being judgmental.

The interviews

We conducted semi-structured, in-depth, interviews by telephone in Hebrew on a convenient date for the interviewees during November 2020 (see the Appendix). The interviewers maintained a calm, relaxed and inclusive atmosphere during the interview and listened to the interviewees without criticism or judgment. Before the interviews, we explained to the interviewees that they could contact the researchers at any time and they were given the cell phone numbers of the principal researcher (KD). They told us that the interview helped them release all the stress and tension they experienced and that it was a kind of psychological session for them. At the end of the interview they the interviewees were asked if they were interested in the phone number of the Israeli association (ERAN)Footnote 1 that is committed to supporting people who experience mental stress following trauma.

The topics that guided the interview protocol development were the experiences of stigmatization from the moment they became aware of being ill, throughout the course of the disease, and during the recovery period (see Appendix). The first half of the interview dealt with the story of being infected, the symptoms, the test and then learning about the positive result and notifying their acquaintances that they must enter isolation. The second half of the interview dealt with the experience of being ill and then recovering, as well as the response of their surrounding environment to them after they had been defined as having recovered from COVID-19. On occasion we changed the wording and order of the questions in accordance with the dynamics of the interview to maintain the flow of discussion and encourage openness amongst the interviewees.

The interviews were conducted by BA graduates in Public Health (N.D, I.P.). The two interviewers were trained to conduct the interviews by the other authors (add initials..), and each conducted two pilot interviews for the purpose of training, which were reviewed for clarity and accuracy and not included in the study. The interview protocol was drafted by the authors with the aid of two recovered patients and was validated during the pilot (see Appendix). The length of the interviews ranged from 25 to 60 minutes (mean duration of 40 ± 11 minutes). We explained to the interviewees they were entitled to stop the interview at any stage, and that they were not required to answer all questions. All interviews were audiotaped and transcribed verbatim in Hebrew using a professional transcriber according to a standardized format.

Data analysis

The interviews were analyzed using the thematic analysis method. A theme expresses a broad central idea that tends to appear and reoccur in the analytical material in different forms of expression. The analysis was carried out in several stages according to Shkedi’s method (2003): at first, the focus was placed on gaining in-depth and comprehensive familiarity with the data by reading of all the interviews. The next stage involved identifying ideas, categories, and themes connected to the study questions. During the third stage, the specifications and ideas were discussed among the researchers (K.D., N.D., H.B.) while engaging in repeated rereading of the transcriptions until saturation was achieved with the final themes. Three expert raters with detailed background in medical sociology (K.D., N.D., H.B.) initially read the interviews to identify structures of stigma and attempted to locate the evidence of stigma and the tactics of contending with the experience of suffering from the stigma, as described by the interviewees. The process of analyzing the texts included three stages. During the first stage, three independent coders (K.D., N.D., H.B.) determined if processes of imposing stigma and feelings of shame and guilt were described in the interview. Next, the differences between raters were addressed at 2 meetings, where all interview findings were discussed and any differences in interpretation were resolved via consensus building. Each rater justified their choice and during the discussion the final terms were agreed upon, arriving at full agreement. The inter-rater reliability level according to the kappa index was maximal – Cohen’s kappa = 1.0. In the second stage, we defined nine themes/sub-themes according to three phases of the experience of illness (discovery of the disease, the duration of the disease, and recovery) as they arose from the interviews. In the third stage, we reread the interviews to code each one in accordance with the themes described in them. The inter-rater reliability level was high – Cohen’s kappa = 0.88.

Results

Interviewees characteristics

The study included 20 recovered COVID-19 patients (13 women and 7 men) between the ages of 22–56 (mean age 44.45 ± 10.35) (See Table 1 for additional details). The period of time that elapsed between their recovery and the interviews ranged between 40–200 days (a mean time of 92 ± 47.36 days). Sixteen interviewees were married with children (80%). two were unmarried (10%) and two were divorced children (10%). There were 18 Jews (90%) (with 12 of the interviewees secular (60%) and eight religious (40%), and two Muslims (10%). Two interviewees (10%) had not worked prior to the disease, and among the remaining 18, three (17%) did not return to work for several months and were still recovering, others took between two weeks to two months to return to work following isolation, and half claimed that they did not yet feel ready for work but were obligated to return by their employers. Five of the interviewees had not been hospitalized nor confined to an isolation hostel (25%) but remained in home isolation for a long period (between one to two months), as the severe symptoms had not disappeared, and they were unable to function. Fifteen (75%) were hospitalized for between one week to several months, four were hospitalized together with other family members (parent/child/sibling).

The data analysis indicated that the COVID-19 illness was experienced in three phases: the first, discovery of the disease, the second, the duration of the disease; and the third, the recovery period. Six themes emerged: (a) Theme I: Shame and the Desire to Conceal the Disease, (b) Theme II: Guilt, and (c) Theme III: Shame and Humiliation in Hospital; d) Theme IV: Stigma; (e) Theme V: Fear of the Patient; (f)Theme IV: Contending with the Stigma and the Guilt. Table 2 presents the division into themes and sub-themes, as they arose from the interviews according to each of the three stages above.

Table 2 Themes and sub-themes according to each disease stage
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Discovery of the disease

All the interviewees described the moment of receiving the answer as a moment of dread, great confusion, and tremendous fear of the unknown. Interviewee M1, a physician, described this moment as follows: “Everything was black in front of my eyes. I was unable to think or speak.” Interviewee F2, a young woman who still lives with her parents, felt that at the very moment she most needed support, she was being pushed aside: “When I received the answer, I was seized by an anxiety attack. I began to shake and cry. They threw me into a room straight away.” While interviewee F10, an ultra-orthodox Jewess, told us of a crisis of faith:

“I refused to accept that I was ill with COVID-19. I went to pieces. I had the sense of failing God, and this was too much for me. I cried all night long and I refused to calm down. I am a very strong woman with great faith. I never suffer from any breakdowns. And at that moment I sensed an emotional breakdown.”

The great crisis, the fear of the disease and the concern over the response of the surrounding environment evoked a feeling of shame and a desire to hide their disease from others including their family and friends.

Theme I: Shame and the desire to conceal the disease

Most of the interviewees were ashamed of having contracted the disease; they felt “singled out” and sensed that this had a negative impact on the value attributed to them by their surroundings. As interviewee F10 described it:

“We were greatly ashamed. We live on a moshav and we are a community, and suddenly you feel that you are ill with COVID-19, it feels like such an embarrassment. As if we are branded with the mark of Cain. I was utterly ashamed. We are an esteemed and well-known family.”

There were interviewees who sought to conceal the fact that they were ill due to fear of how their surrounding environment would react, and they preferred to avoid encountering hostility and hatred. Thus, interviewee F6 (a teacher) recalls:

“I caused lots of people to go into isolation before Rosh Hashana (the Jewish New Year) and I felt ashamed. To this day, my pupils do not know that I am the COVID-19 case, as the reactions were extremely harsh and extreme: How irresponsible! What sort of a school are you? You should be ashamed! I had a terrible sense of guilt.”

Interviewee F9 asked her children to hide the fact that they were ill: “I concealed the information. I was greatly ashamed of this.” Interviewee F11 explained the shame she felt when all her neighbors looked at her being taken away by ambulance. She even compared being ill with COVID-19 to having sick with AIDS, which is known to be a disease most associated with stigmas and social sanctions (Tran et al., 2019):

“I had neither stolen nor murdered. I was ashamed of the situation. I saw unbelievable responses in the WhatsApp group. It is humiliating. As if I had AIDS.”

In contrast to the previous interviewees, although Interviewee F12 was afraid of the response, in the end, she felt it was her duty to tell and was forced to contend with difficult reactions:

“I was afraid of telling, people do not react to it in a very positive manner. They accuse you, as if you were really to blame. They accused me of having known and having come and sat with them deliberately. It really frustrated me, so much so that even now I am unable to look those people in the eye. Even after I received confirmation from the doctor that I had recovered, I still chose to stay at home.”

Theme II: Guilt

All the interviewees expressed feelings of guilt toward those close to them when they told them that they had to enter isolation and be tested. They felt as though they had done something bad, that they were like criminals who had broken the law. Eventually, their friends and family did cause them to disobey the directives, as many interviewees told us that they did not disclose or “give up” the names of many people who had come into contact with them, as these individuals asked that their name should not be mentioned during the epidemiological investigation, to avoid going into isolation. All said they were afraid that they might have infected others and reported a sense of relief when they found out that this was not the case. Interviewee F6 shared these thoughts as follows:

“It is extremely emotionally difficult to accept this. First, that I am ill, and have caused three classes to enter isolation before Rosh Hashana and affected lots of friends and family. At least I did not infect anybody. But the feelings that engulfed me the most were of guilt and shame. Not the fact that I was ill. It is your surroundings which cause this. Every message of, “Oh, how I would love to celebrate Rosh Hashana with my mother.” You are ashamed that this is because of you. So that this is both guilt and shame rolled into one.”

Interviewee F10 told us: “I felt as though I had broken the law. That people had gone into isolation because of us. We were lucky that everybody tested negative.” Interviewee F12 shared these thoughts:

“I was so afraid that I was unable to sleep at nights until I found out that I had not infected anybody. When I told everybody, I felt guilt, because it means that you are about to bring people’s lives to a halt. Lots of people who had been in contact with me were mad at me: “What? You were ill and sat with us, don’t report us!” They really blamed me. And in fact, I didn’t report them. Only my close family. Even though I was afraid that maybe they had been infected and would infect others.”

Duration of the disease

One half of the interviewees, mainly parents with children, returned to that moment when they were certain that they were about to die, whether this was at home, in the ambulance, in the COVID-19 Emergency Room (ER) or during hospitalization. Interviewee F7 had already envisaged her own funeral: “They had me hooked up to a ventilator and my entire body recoiled out of fear. The entire time I was imagining death. My own funeral. The immense fear that my children would be left alone.” They felt a sense of helplessness due to the disease, and they told us about the humiliating experiences they had undergone in the hospital.

Theme III: Shame and humiliation in hospital

The interviewees who were hospitalized described humiliating experiences in hospital, which, on the one hand, caused them to feel a greater sense of shame, but, on the other hand, helped them understand the stigma situation. Interviewee F3 described the following:

“I arrived at hospital in a very severe condition. Two doctors and three security guards took me to the MRI, and all along the way they were trying to brush people aside, shouting keep away, keep away, this is a corona patient. And as if in a horror movie, people were jumping up, frantic. I have a strong memory of this. I felt shame. Medical exposure. Insecure. When I came back, I called the doctor and told her I have been utterly humiliated and if you are unable to schedule a test for me in a manner that safeguards my rights as a human being, then don’t take me for a test or take me at night. By the way, the COVID-19 Department is a closed department. All the doctors are like aliens, you don’t know who is standing in front of you. There is no privacy. They speak with the patients via intercom. And if no doctor or nurse enters the department, you can remain there suffering for several hours until somebody comes to you. This experience is terrible. It is a scar that will remain with me for my entire life.”

Interviewee M2 elaborate on this theme further:

“Until the ambulance finally arrives to take me home from hospital, the driver shouts to everyone to stay clear, COVID-19 patient! COVID-19 patient! ..People ran away. Do you know how embarrassing this is? You say what? All of this because of me? In what terrible dreamworld am I?”

Theme IV: Stigma

Interviewee F10 aptly reflected the stigma regarding COVID-19 patients when she described her stay in the COVID-19 dedicated emergency room:

“In the Torah there is a situation whereby somebody who does something bad is sent away from the community to where the lepers are. I looked around at all the ill people and said to myself: We are just like lepers. They are isolating us from the public.”

Later, this theme was divided into two sub-themes: The fear of the patient and the effort to contend with the stigma and the guilt associated with getting infected.

Theme V: Fear of the patient

The interviewees shared with us how their immediate surroundings distanced themselves from them. Interviewee F2 shared the following thoughts with us:

“I was completely stressed out. I had anxiety attacks. So, in the first few days you cry, and nobody can touch you. They treat you as if you were a leper. I felt completely alone. That I am repulsive. As if anybody who would touch me would also become a leper. At the hostel I received many phone calls, including from people with whom I was not particularly close. I felt that people were treating me as if I was going to die. They came scuttling out from their hiding places because they thought that if she dies, then afterwards I will regret not having spoken with her.”

The interviewees complained that at the hospital, the staff were afraid of patients with symptoms; therefore, patients were discharged and sent them home without getting checked, which impeded the ability to diagnose them on time. Interviewee M5 said:

“In the ER they didn’t give me a COVID-19 test. They conducted blood tests. They were afraid of touching me. They put me in some room out of the way. They discharged me in this {sick}condition, so they didn’t diagnose {me} on time.”

Theme IV: Contending with the stigma and the guilt

The interviewees were less conscious, while they were ill, about contending with the guilt and anger from people in their surroundings, as they had to focus on fighting the disease and getting better. This is how interviewee F1 described this:

“When they told me that my cousin had tested positive, I was just in the hospital with a high fever. At that particular moment, I really wasn’t interested. But she was mad at me. At that time, I had no strength to deal with others. My entire being was focused on recovering.”

Interviewee F13 found another way of dealing with this:

“I come from the world of treatment, so I wasn’t concerned about what other people would think. At the beginning of the pandemic, the issue of the stigma was more present. For example, people would say, “don’t make me go into isolation, don’t mention my name,”. I think that a person should be extremely calm and know how to stand up to such statements. We need to support the patients. We shouldn’t be accusing them. In the end, the sick will prefer to stay at home and will not go to be tested so that people won’t then say: “That family is a sick family.”

The recovery stage

The interviewees who spoke about the recovery stage, some of whom even did so several months after being defined as “recovered patients,” talked about their lives having completely changed. They talked about a different reality. Most of them remained in a difficult state of mental health, beyond the physical symptoms that they were suffering from. They found it difficult to return to the life they had enjoyed before the disease. The disease had left them with deep emotional traumas and scars, and half of them were trying to recover through emotional treatments and the use of anti-anxiety medications. The situation affected their family members, and above all their children. In this context, Interviewee M1 related:

“There is no such thing as a “recovered patient.” I still suffer and anyone who was infected suffers from dizziness, weakness, muscular fatigue, a sore throat, and breathlessness. Nowhere have I heard mention of the fact that people become depressed. I am still depressed. And people are not aware of this. This really must be made public. At night I feel a sense of pressure in my chest. This is the first symptom I felt when I was tested for corona. I still feel it, so much so that it wakes me from my sleep. So, when I go to work, I take Cipralex because I suffer from anxiety and fear {of}becoming infected again.”

Interviewee F8 shared with us the anxieties she suffers from since having recovered:

“I took all sorts of sedatives. I turned on the television and heard that somebody had been infected for a second time, and suddenly I felt a sensation of breathlessness. Consequently, I began to become depressed and afraid.”

Interviewee F3 consulted a psychiatrist:

“I did not get embarrassed and went to see a psychiatrist. He said to me: “Listen, you are undergoing a very severe trauma and you need to get treatment for it. You are in a state of dependency that you need to accept and to process.”

Theme V: Shame and guilt

During the recovery from COVID-19 stage the feelings of guilt and shame were transformed, as the interviewees begin to reflect about themselves and express regret for the harm caused to, and burden placed on, their family, and, above all, their children.

Guilt at the harm caused to the family

Interviewees mentioned the feelings of guilt due to the harm caused to their family members. Interviewees M3, the head of a family who was ventilated and sedated told us:

“What hurts me the most is the family angle. The fact that several months went by without my family, the children slightly went off track, and this wouldn’t have happened if their father would have been at home. Discipline was very lax, and this hurts me the most. I don’t blame them. Being without a father and a guiding hand. They aren’t to blame, and neither am I. It just came upon us, and it is hard.”

Interviewee F8 told us how her anxieties had an impact on the other members of the family:

“I am certain that I have caused damage to my children. As a result of the disease, I won’t let them bring friends home or go to their friends. My youngest son at kindergarten is automatically unwilling to play with friends because I was constantly convincing him that this was forbidden. My 18-year-old son wants to celebrate his birthday, he asked to sit with one friend in the garden. I told him that I won’t allow even half a friend to come here. And once my house was the most open house you could find. There were always guests at home. We were always awake. All the time laughing and having fun. Today, there is absolutely no way I will go out of the house.”

Theme VI: Increased use of the health services

Many interviewees stated that before they became ill with COVID-19, they never visited a clinic, and that COVID-19 had made them extremely anxious about their state of health. For example, interviewee M4 related that prior to contracting the disease, he was not even aware that a branch of the HMO clinic had opened near his home, and now was fully familiar with the entire staff at the clinic:

“A branch opened under my very nose, and I knew nothing about it. I wasn’t in a situation in which I needed to know, and now I know the people who worked there too well.”

Interviewee M6 added that now he constantly undergoes tests, some of them probably out of anxiety: “Before the corona, I would hardly ever go to the doctor. And today, for every stupid little thing I phone the doctor, I ask him, and take tests. I am stressed out. I check myself all the time.”

Interviewee F8 now feels uncomfortable about going to the clinic: “Each time they have to give me an ECG test. They tell me that nothing is wrong with me. Today, I scheduled an appointment for the doctor, for no reason. I schedule appointments for no real reason.”

Theme VII: Stigma

Exclusion of the recovered patient

Most of the interviewees (90%, n = 18) reported that they felt stigmatized and excluded from social events by their surrounding environment after they had recovered. They described how people were reluctant to be in contact or meet with them and stayed away from them. They used descriptions of people who were “socially shunned.” Ostracized, shaming, fear, escape, repulsion, distancing, shame, and the phrase that was repeated by all of them: “They turned me into a leper.” Notwithstanding, the interviewees accepted the actions of those surrounding them and regarded them to be “natural” and tried not to be judgmental as M6 said:

“People were afraid of being around me. I was like a leper for many people. They were scared. Keep your distance from me just a bit. Or they didn’t want to touch things that I had touched. That is natural, but it is an extremely unpleasant feeling all the same. Of being a leper. They don’t want to get close to you. People are really scared. Truth be told, I did understand them.”

Interviewee F4 told us of the need to be on the defensive all the time and to “take preventive action”: “When I came out of isolation and everything, people still maintained their distance. They were afraid that I was carrying corona around with me. And I would say: Hey everybody, I am after two negative tests. I automatically felt the need to be on the defensive. There are many recovered patients who feel like lepers. But this is legitimate. No one wants to get in trouble or lose a relative or enter isolation.”

Interviewee M7 told us about children’s experiences, and stressed the need for explanatory publicity to address the stigma:

“I know a girl who contracted COVID-19 and they subjected her to shaming and sent her WhatsApp messages, and I think that much more explanatory is needed for children. Adults can cope. Children who are the victims of shaming and ostracization find it difficult to cope. It is necessary to engage in a program of explanatory publicity in educational institutions to underscore the fact that those children are not guilty. It is not something done on purpose. They are not ill with leprosy. They are ill with corona.”

Interviewee F12 did not leave her home for a long period of time after she recovered, due to fear of the response of those surrounding her. Precisely when she needed support, she felt rejected. This caused her to reflect on how she had judged COVID-19 patients and had accused them before she became ill herself, “It took me time to leave home because I was afraid of people’s reactions. Even after I left, people still looked at me in a weird fashion and stayed away. They look at you as though you are defective. People were still concerned about being around me. I felt spurned. As if all of a sudden these are not the people that I know. Instead of support and understanding, I felt rejected by people and shame. I began to think how I had reacted to COVID-19 patients before I became ill and just how wrong it is to look at an ill person and blame him for this, as you can never know where it will take hold of you during your lifetime.”

Interviewee F2 told us how she herself had kept her distance from people after she recovered: “I was scared to death of leaving the hostel. I received all sorts of responses, ostensibly as a joke: “I won’t risk meeting with you, sorry sister, if I have to go into isolation one more time, they’ll have to put me in a mental hospital.” So why should I go out if people don’t want to get close to me? Wasn’t it enough that I was 17 days alone, now I have to continue with my “aloneness” outside? And then, when I came home, I kept my distance from my parents and brothers. It was also strange for me suddenly to come near them. I spent another month at home. I was afraid to return to work, and the truth I sensed a vibe of “stay at home and rest”.

She continued to share with us tangible experiences of shaming that she experienced. “A friend saw me at a cafe, and said to me: “That’s it? You’re negative?” I told him in a positive tone: I am not negative, but I am not infectious... He shouted, “what do you mean positive but not infectious?” People lifted up their masks {to their face} and moved to the other side of the room. I started to cry... Afterwards we went to the restaurant where I work, and my manager joked: “So you’ve come here again to infect everybody?” I didn’t really think it was amusing. Then, one of the waitresses saw me at the entrance and said, “Oh my God”, she took three paces back. I said to her: Have you seen a monster here? I couldn’t understand her exaggerated response. I sat at the table with tears in my eyes. A friend who works at the restaurant came over and hugged me. At the end of the day, all that had happened was I contracted COVID-19. I hadn’t sprouted antennae or something like that.”

Interviewee F3 shared with us how the stigma was even passed on from her to her young son, as now other mothers were deliberating as to whether they should invite him over to their homes to play with their children, “Everybody saw how many ambulances came to this house, so they clearly understand that there was a problem. So, the neighbors kept their distance. And close friends also stay away. I want to take my child over to a friend, but his mother says: “I understand that you were ill, I’m not really sure.” Then I began to panic that the children should not be infected nor infect me once again.”

Interviewee F7 was filmed for a Ministry of Health publicity campaign broadcast and was subsequently the victim of shaming on social media: “There was an abundance of nasty responses: “You are an actor, you are a liar, you are reading from a text, it’s all nonsense, you must have received lots of money. At the beginning, all this really made me cringe. I thought that everybody would say, well done! It turns out that on the day the advert shooting was to take place, there were several people who canceled, because they heard that following the previous campaign, those who took part suffered from much abuse and shaming.”

Theme: Contending with the stigma – attempt to return to normal life

The interviewees managed eventually to gain some closure. Although they still suffer and experience anxiety, they are trying to rehabilitate themselves in various ways and mainly seek to break free from the thoughts of “Why of all people did this happen to me?” They are trying to return to normal life and remain that way, to break free of the shame and the guilt, even if most of them are still in a state of trauma. For example, interviewee F2 shared the following with us: “I changed my approach. Whoever does not wish to come near me, may stay away. I will go wherever I desire, if you do not want to go to those places, go into my Instagram and you will be able to see that I am there, so ‘just don’t come by.”

Interviewee F10 added their insights regarding the COVID-19 pandemic that occurred mainly among religious interviewees. Insights regarding the role of religion in gaining perspective and helped them “become better persons” shows us how contextual personal and community interpretations might help to mitigate the stigma:“… I understand that people are afraid of you. Today I no longer let this preoccupy me. Two months really finished me off. I was completely crushed. I would see just how people look at me outside. People were shocked to see that we were ill with COVID-19. It was a real slap in the face for everybody… Even if you are an observant Jew and genuinely a good and very spiritual person. It still made all of us delve down extremely deep to engage in profound contemplation. It was both Yom Kippur (the Day of Atonement) and Sukkot (the Feast of Tabernacles) wrapped into one; these are the festivals of introspection and soul-searching. What you’d call deadly timing... If we really want to take the good things that the corona has brought with it, we need to understand that this was an act of God. God brought the corona to make a better world.”

Interviewee F8 shared with us how, despite her fears, she is trying to cling on to life, so as not to let her anxieties overwhelm her and destroy her from within, “Everybody thinks that I have gone mad, but this is not the case. It is because of what I went through that I am scared. The kindergarten teacher told me to cut the child some slack, so yesterday, I took him to the park. I am trying. I am working on myself a lot. Whatever will be will be. You can’t just stop living. It is either you actually die, or you die inside.”

Discussion

The isolation required from people infected with COVID-19 is not only a physical barrier, but one that has the potential for inducing deep fear, social isolation and stigmatization. Our findings indicate that as a result of the physical limitations imposed on those contracting the disease, the accompanying process of stigmatization is all-encompassing and begins at the stage of virus discovery and continues throughout the duration of the disease and the recovery stages. The social dynamics accompanying the process of stigmatization includes feelings of guilt, shame, exclusion and, on occasion, even humiliation. These findings are consistent with previous studies on the implications of the stigmatization processes for people with disabilities or those suffering from chronic diseases (Whittle et al., 2017). Stereotypes are a means of reducing the cognitive burden of dealing with complex situations. They help their holders reduce perceived information into manageable information, thereby helping to make sense and understand an unpredictable social world (Snyder & Miene, 1994). Throughout all the interviews, it became apparent that during interactions with the environment, the interviewees internalized the stigma imposed on COVID-19 patients. In the process of self-stigmatizing, interviewees feared the reactions of their environment and feared sharing with friends, family and co-workers that they had contracted the disease. The official national required duty and responsibility to report this to others so that they might enter isolation forced them to deal with the environment and led to feelings of shame, deceit, and guilt. Even if they did not necessarily experience direct and abusive negative reactions, they internalized the reactions they feared; so, whoever was able to hide the fact that he or she was the one responsible for causing others to enter isolation, duly hid it.

The findings in this study indicate the existence of stigmatization and stereotyping with the emerging COVID-19 pandemic. In contrast to stigmatization of stable medical conditions, such as chronic or mental illnesses, people suffering from COVID-19 stigmatization felt more isolated, often with nobody to turn to who would address their uncertainly, anxiety and support their emotional distress. There were no support groups and no public mechanisms available to balance the pervasive fear from infection and being located near people suffering from COVID-19 with an emotional and social publicity campaign. These characteristics were common during the first wave.

We might have expected that the very issue of universal exposure and the vulnerability of the entire population to the pandemic would lead to greater understanding and acceptance of those who had been infected. On the contrary, the shared, common fate did not lead to the development of social solidarity and support for the sick and infected, especially during the first wave and before the entrance of new variants and vaccines when the pandemic took different turn. Classic theories of social solidarity indicate that it is precisely during times of emergency that social cohesion is created, a feeling of a common fate and mutual responsibility (Durkheim, 1897). The outbreak of the COVID-19 pandemic led many times to the opposite result with the lines of social differences becoming stronger and clearer. At the beginning of the pandemic, in Israel, just as in other countries around the world, the stigmatization process underwent changes and was dynamic. If at the beginning, the disease was perceived as having been imported from abroad, it was foreign patients mainly from the Far East who were exposed to the experience of stigma and racism. The more the disease spread across Israel, the more the stigma began to transform, as we have seen in our study. Compared to other studies of stigma in health conducted in Israel, there are similarities and dissimilarities.

Previous studies concentrated on stigma and coping among infertile Israeli women (Remennick, 2000) thus focusing on gender and the place of fertility in Israeli society, another study explored family stigma among caregivers of persons with Alzheimer’s disease from the perspectives of Israeli-Arab caregivers (Abojabel & Werner, 2019) thus highlighting the family’s role and context of aging and ethnicity. The issue of ethnicity was analyzed by Soffer and Ajzenstadt (2010) in the context of HIV/AIDS and how it reflects the wider moral-sociocultural order of Israeli society. While the first studies dealt with non-communicable diseases, HIV/AIDS is a sexually transmitted illness, carrying with it stigma of the “other” and “deviant”. The COVID-19 illness during the first wave represented a different case study, with great uncertainty yet supposedly with less potential for stigma. The context of a fast-spreading pandemic turned into a unique occasion to understand the role of stigma as experiences by patients and how it was reflected in all the stages of illness to recovery. As the pandemic advances, and with more waves to come, the entrance of vaccines and treatments, improvements in knowledge of transmission, we gradually entered to what has been termed the “new normal” (Boas & Davidovitch, 2022).

We have several suggestions for addressing social stigmatizations as lessons for future pandemics. We need to rethink the role of solidarity and more attention needs to be given to social stigmatization, especially in the current context of long COVID morbidity (Perlis et al., 2022). There is a need to involve social scientists from psychology, sociology, anthropology and ethics, with more participatory studies involving patients to better understand and respond to the emotional, psychological and social contexts of preparing for future pandemics.

Limitations of the study

Our study has several limitations. First, the small sample size due to challenges of getting covid-19 patients to agree to participate, but we did manage to maintain a mix of interviewees of different ages, marital status, different geographical areas within Israel, different levels of religiosity and different religions. Second, the data may not be generalizable outside of Israeli culture, and the small sample makes generalizability problematic. Each country has their own distinct health care delivery systems, comprising unique legislative and organizational characteristics, and within different clinical settings. However, the strengths of the study are the richness of the data and the opportunity to provide a window into the interactions between Israeli culture and COVID-19 experiences is unique. Third, although the themes seemed to be consistent and the influence on the findings were frequently discussed during regular face to- face meetings or through e-mail correspondence in the period of data collection and analysis, the local and specific impacts of these societal barriers and emotional impact may have been under appreciated. Fourth, the interviews were transcribed in the respective native language, Hebrew. This may have increased the chance for variations in the interpretation of our data (Larkin et al., 2007). We made all efforts to ensure methodological rigor and validity of the translations from Hebrew by using a standardized codebook, meeting frequently, sharing and comparing our results, and by performing a pilot analysis.

Conclusions

The COVID-19 pandemic led to the announcement of global health-related states of emergency.

The present study has considerably advanced our understanding of stigma mechanisms related to an ongoing pandemic. The outbreak of the pandemic, coupled with the rapid pace of its spread and the damage it caused to the overall population, was a catalyst for the feelings of fear and dread. History teaches us that pandemics were the cause of violence and atrocities against minorities and those dubbed “others”, particularly those suspected of having spread the disease. The COVID-19 pandemic generated racist reactions (“the Chinese flu” as President Trump referred to it) and social exclusion (Kurilla, 2021). The condemnation of these phenomena was extensive and comprehensive in many places around the world. However, a much “quieter” process of stigmatization of COVID-19 patients and recovered patients themselves spread rapidly. This process was the result of the totality and draaconian nature of the emergency measures adopted by the state (and the world, WHO) and its authorities to contend with the spread of the pandemic. The findings indicate that the phenomena of stigmatization is broader and all-encompassing, and the damage that is related to it is far greater in undermining communities and long term social trust. We urge future studies to test this model within different countries and contexts, to raise awareness among decision-makers about the true lasting costs of emergency measures adopted to safeguard public health. Alongside such measures, authorities should offer emotional support services for the victims of stigmatization processes that continue to accompany the COVID-19 pandemic.