Testimonies of recovered COVID-19 patients and the stigma they experienced

Stigma has become a public health challenge during the COVID-19 pandemic. This COVID-19 related stigma refers to having a negative and disapproving attitude, coming from being infected, or even just having close contact with a COVID-19 patient that will result in the “spoiled identity”. According to Zhao et. Al., COVID-19 related stigma can lead to a range of negative consequences such as psychological stress, discrimination, health-related violence and, worst of all, suicide for affected populations including COVID-19 survivors, suspected or quarantined cases, and people returning from overseas. In addition, COVID-19-related stigma could become a barrier to the control and prevention of COVID-19 because people who experience high levels of stigma are less likely to disclose their health status, thus deterring professional help-seeking behaviors , and refusing to take COVID-19 tests. As stated by the WHO director-general Dr. Tedros Adhanom Ghebreyesus, “stigma, to be honest, is more dangerous than the [corona] virus itself”

Written below are personal testimonies of COVID-19 patients and the stigma they experienced during the pandemic from the results of the study conducted by Chew, CC., Lim, XJ., Chang, CT. et al.
“As I see that everyone was fearful (with the disease). The nurse was terrified (laughs), the doctors were afraid. The nurse who checked my temperature and blood pressure was not happy, but I can understand (she was in fear). Then I said, “Why are you scared? I have already recovered; I am even more scared.” She was scared and she was sitting far away from me, she didn’t want to be with me for long, (and) she didn’t even want to talk to me.” (58 years old female patient, cashier)
Some of the recovered participants felt socially isolated because the people around them were trying to keep a distance. A few participants noticed that those suspected but not confirmed COVID-19 positive were also isolated by the neighborhood.
Labeling also became the effect of having the disease even after they have recovered. Participants who recovered from the disease were still treated as COVID-19 positive patients by the civil servants.
“I told [him] that I was once COVID-19 positive, but now it’s already negative. Then he said it was all right, and he’s going to call back (but) until now he hasn’t called [me] …I don’t know when I should visit (the service counter for child birth registration) … maybe they felt that this (previously) positive COVID (people) would infect them, [and then] infect their families.” (33 years old female patient, finance assistant)

While the issues of isolation were common among participants of their study, most of them asserted that they should be treated equally by the public and not by staying away from them.

“(They) should not stay away [from us]. I want to ask them: ‘if people do this (stigmatization) to you because you have an illness, what are your feelings?’ We have to take care of people’s feelings. This wasn’t just about us, it was about others, too.” (55 years old, wife of patient, housewife)

Emotional support is essential when experiencing these types of stigma. One of the recovered participants hoped to maintain an interpersonal relationship and a cheerful place of work just like before the pandemic.
“If possible, work as before COVID-19. If it is possible to create a warmth of human relationships just as before COVID-19, like a happy, friendly (working) environment, and now all this has been diminished, I understand the safety measures at work in which we can’t get together and have to be alone, we all understand that.” (38 years old female patients, staff nurse)
Most of them suggested that patient counselling was important to help them cope with this period. The follow-up telephone calls by public hospital psychiatrists were deemed helpful to check on the patients’ condition.
“May be through emotional (support) like what they are doing now. The government psychiatrist they can call check on them, because some may have gone really bad depression, you know all don’t cope it same way right, maybe some was really down until depression and all, so maybe the psychiatrist doctor can help them out by calling them and asking them about their condition, I think they already started doing that.” (28 years old female patient, medical doctor)
Participants suggested that a religious teacher would be helpful in coping with a stressful period.
“He [the Ustaz] may help by supporting those of us who are Muslims. Sometimes, we say a predestined test and the Ustaz may help spiritually if anyone is stressed out.” (43 years old female patients, nursing manager)
COVID-19 had made a big effect in our lives. These effects have a lot of negative effects to the emotional and social well-being of COVID patients. As members of the society we should help in providing emotional support and promoting emotional help for recovered patients not discriminating them.

References:
Chew, CC., Lim, XJ., Chang, CT. et al. Experiences of social stigma among patients tested positive for COVID-19 and their family members: a qualitative study. BMC Public Health 21, 1623 (2021).
Yuan, Y., Zhao, YJ., Zhang, QE. et al. COVID-19-related stigma and its sociodemographic correlates: a comparative study. Global Health 17, 54 (2021).