Background
Long COVID
Long COVID and mental health
Methods
Variables | Patients (n = 35) N (%) |
---|---|
Age | |
20–40 years | 8 (22.9%) |
41–60 years | 20 (57.1%) |
> 60 years | 7 (20%) |
Gender | |
Male | 10 (28.6%) |
Female | 25 (71.4%) |
Marital Status | |
Single | 4 (11.4%) |
Married or in a relationship | 19 (54.3%) |
Separated or divorced | 10 (28.6%) |
Widowed | 2 (5.7%) |
Educational level (%) | |
No formal studies but can read and write | 1 (2.9%) |
Primary education | 3 (8.6%) |
Secondary education | 19 (54.3%) |
University education | 12 (34.3%) |
Employment status (%) | |
Employee | 6 (17.1%) |
Employee with TWDa | 22 (62.9%) |
Unemployed, receiving benefits | 1 (2.9%) |
Unemployed, not receiving benefits | 1 (2.9%) |
Retired | 5 (14.3%) |
Topic list | Questions for patients |
---|---|
Before the interview | 1. Greetings, words of thanks, and introduction of the interviewer and observer 2. General information about the topic to be discussed and the objective of the session 3. Explanation of ethical aspects (confidentiality, informed consent, and permission to record) 4. Explanation of the interview dynamics (We will ask some questions to find out about your experiences. We are interested in your opinions. Before we continue, do you have any questions or any doubts? Do you agree to participate?) |
Emotional well-being | How do you believe your ongoing symptoms have affected you on an emotional level? |
Social support networks | Do you consider yourself to have a social network, such as family and friends, to support you through your ongoing symptoms? How do you consider your social network to be? |
Experiences of discrimination and perceived social stigma | Do you believe you have faced discrimination due to having Long COVID? Is there a certain stigma surrounding it? |
Results
Emotional well-being
Social support networks
When news about this began to appear, it was comforting because people then called you and said: “Hey, I’ve heard on the radio that there are more people like you.” And it turns out I wasn’t making this up. For me, that was wonderful. (Female, 64 years old, 20 months with Long COVID).
Experiences of discrimination and perceived social stigma
Yes, there is or was some rejection. In the beginning, when I said that I had long COVID, which was not yet very well known, I was told “Get out of here, you are going to infect us”, and that was from a doctor! They told me that I couldn’t be there and that I should have stayed at home. Stigma doesn’t come directly from people, but rather from fear and a lack of knowledge. More than telling these people you have to… no, it’s the lack of knowledge like what I said at the beginning about doctors, that I had to go. They tell you that this is all psychological, you are somatizing, go to a mental health clinic… but well, fortunately, I think people are getting to know about it more and more. (Male, 44 years old, 12 months with Long COVID).
Well, yes, I am angry, not only with the health care system but also with professionals because I have told them: “the situation is stressing you out but we are sick and isolated at home, and you are not paying any damn attention.” The way they are acting is an embarrassment. (Female, 50 years old, 18 months with Long COVID).
Discussion
This study has delved into the emotional impact experienced by patients with Long COVID. Our participants emphasize a before and after in their lives and an irreparable change, referring to the adaptation process they have needed and continue to need to undergo for their new lives. It is not new that chronic diseases can be disruptive events in the lives of those affected [79]. Several studies describe this reality in relation to COVID-19, through ideas such as losing their sense of self, a significant impact on identity, and the separation between a pre-COVID life and a post-COVID life [51, 80‐82]. Similar experiences have already been described by Charmaz (1983), who delved into the suffering of patients with chronic diseases caused by physical symptoms and psychological distress, in addition to daily limitations or social isolation [18, 83]. Ladds et al. (2020) describe the disease as “terrifying, confusing, and debilitating”, based on the severity of its symptoms and several aspects reported by affected patients, such as the lack of medical knowledge, uncertain prognosis, and a stagnant evolution with no clear prospects for recovery [18]. In this sense, the participants in this study have established a direct relationship between persistent symptomatology and an anxious-deprived state, in addition to other aspects such as uncertainty. Reinforcing this idea, the previous bibliography affirms that fewer persistent symptoms are related to greater life satisfaction [72]. The Burton et al.’s study (2022) also states that post-COVID patients with ongoing symptoms have experienced mental health effects due to the symptoms themselves, the impact on their quality of life, the lack of care and health services, and the uncertainty of the trajectories of their disease, among other examples [49]. The negative mental effects can be related to physical symptoms, considering that a bidirectional relationship can be established between these variables: physical symptoms lead to poor mental health and a greater mental load can aggravate the perception of the physical symptomatology [35]. In addition, one of the keys to understanding the negative impact on the emotional well-being of these patients would not only be in the symptomatology itself (biological character) but also in the changes to patients’ quality of life and routines (social character) [48]. Delving deeper into this idea, our results have related different negative sensations to their direct causes, according to the subjectivity of the patients, such as uncertainty due to the unknown development of their disease and frustration due to their lack of improvement and the lack of treatment and medical care. Coinciding with these findings, various studies have identified multiple causes that can generate concern, frustration, confusion, and anxiety in this group of patients, including: the lack of information and knowledge about the disease and its causes; ignorance of its evolution and the lack of treatment; the health care received; and the functioning of the health care system during the COVID-19 pandemic [18, 50, 80].
Regarding the stigma generated, our study has identified two main sources of discrimination: the health care system and social services in relation to the workplace. Like in other studies [18, 80], a stigma generated by the general population, based on mistaken beliefs and ignorance of the disease, has been identified. In relation to the health system, patients with Long COVID claim to have encountered many difficulties in being treated by the relevant medical services, including mental health services [18]. This study has not been the only one to identify that, when patients try to receive optimal care, they are met with barriers, such as a lack of scientific knowledge about the disease, which has led some health professionals to question the veracity of the patient’s symptoms or has resulted in them associating the symptoms with psychiatric origins without carrying out previous tests [48]. Both a lack of knowledge and discriminatory treatment in health care settings have contributed to the emotional distress of many patients [50, 51, 82, 84]. As pointed out by Hadler (1996), “If you have to prove that you are sick, you cannot get better” [85]. Very similar experiences have been reported by fibromyalgia patients, who, at the beginning of the disease, had to fight for its diagnostic recognition, due to the refusal of health professionals to accept it [86]. Moreover, in relation to the workplace and, specifically, the process of returning to work is one of the issues that has caused the most anxiety and concern [81]. Our participants verify that there is a relationship between the inability to return to work and poor mental health, which is one of the biggest concerns for patients. This concern is not only due to their poor physical condition but also due to their cognitive and mental impact [18]. Regarding the process of being assessed by a medical committee to return to work, there are no other studies that have further explored the experiences of patients when describing this step and the misunderstanding generated when discharged from work. For many of our participants, the treatment they have received has been inhumane. Several of them have requested protection measures and investigations to carry out an adaptation of this process. These discriminatory experiences must be taken into account because they may have a negative impact on the health of those affected, thus generating health inequalities in stigmatized patients with Long COVID [87].