The themes that emerged from the common events experienced by the studied women included; (1) stressful life events, (2) participation of social activities, (3) concern over community acceptance, (4) feeling of hopelessness, and (5) dealing with emotional suffering.
Theme 1: Stressful life events
Stressful life events refer to the emotional, economical, and physical expressions which were recognized by women who felt that their life was not going on well. Their shared expression of traumatic life events is then established as a theme from the frequent quoting of the local term “Mejenneq”. This term is broadly stated in detail from women’s expression of challenging circumstances linked with their low income and work strain.
Several women described their condition of living with less-income owing to either termination of work or unemployment as shown in (Table 1). This financial insecurity was one of their main worries reflecting on the challenges to run family matters with fewer earnings. One of them has described her financial problems stating;
“I had no enough money to spend on my family needs at that time and I could not find someone who may ease my situation. I am the only person providing all expenses in my family”. (Zenith, L12-13)
There was a feeling amongst a large number of women that being widowed or divorced and running the family task alone was a burden to bear lonely. Moreover, some of the interviewed women in this study described traumatic parenthood experience of handling all issues of family life.
Family work overload
Notwithstanding with expectations of social-based roles in the local community particularly women’s position in family matters, one-third of the women described a lack of help from partners as a responsible contribution and worried about that they feel overburdened on domestic activities and working for earnings. This level of strain that the participant has repeatedly expressed might suggest as contributing factor for their susceptibility to developing psychological distress or even depression. Describing concerns on their casual of increased family load, some of the women repeatedly quoted “Yesira Ch’ana” representing the bulkiness and difficulties of the task combined with adjusting her life with illness, and the role of handling domestic activities.
One of the participant’s description gave the impression that she was in despair of emotional distress and mentioned;
“I am obliged to be considerate for taking care of my sick husband, take care of myself by following-up on my treatment, and look after all tasks at home. At the same time responsibly be the breadwinner of the family”. (Filagote, L21-L24)
Theme 2: Decreased participation in social activities
The concept of the women’s reduced participation of activities including social engagements and their stand of interacting with others was explained by some of the interviewed women. This also included their experience of being isolated and feeling lonely adjacent to their psychological disturbance for not being active in their day-to-day activities.
Decreased social engagement
Numerous women who were interviewed have explained their worries about not involving any social engagement. This was related to, their perceptions of not fitting in, and feeling ignored. Possibly, the interesting narrative that signifies the thoughts of some women on being socially detached, was self-imposed isolation. It was also related to their perceptions of being unique from other people due to the illness or not getting other people’s attention. Yet, they mentioned that they never shared their feelings with anyone.
“I hardly had any contact with my friends, neighbors, or any other person. Can you imagine I have not met any person for a long period? No more fun! I don’t need to bring my hard feelings to other’s life” (Saba, L31-L35)
The emotional suffering displayed by several women who explained their turning away from all sorts of communication or interaction by showing their preference to remain alone. A participant described how her previous experience of negligence from people additionally backed to her feelings of loneliness. The strangeness in this narrative may partially indicate their decreased interest to have a relationship with others. She mentioned;
“From the day I was diagnosed, I no longer attend my classes and I remain in the student residence alone. I feel as though all students know my status and believe that they are always talking about me”. (Bruktawit, L9-L11)
Thus, these feelings of absolute disconnectedness from the external world which shows these women’s inability to interact with the surrounding people in a meaningful way.
This form of feeling loneliness was also determined by these women’s moods of being unable to establish any social network which occasionally may be due to simply upholding confidentiality or maintaining the secrecy of her illness. Yet again, this practice may avoid them to seek support from others as some of the women appeared to use this loneliness as a coping mechanism to manage their distress and suffering.
Theme 3: Community acceptance
Most of the women described their unfavorable belief or perception regarded towards the community which included their expected fear of social acceptance and possibly worried about not receiving the deserved public attention due to their illness or impairment. Concerns of embarrassment, disgrace, and rejection surrounding the living experience of the interviewed women were merely the core feelings they shared.
Belongingness and support
As mentioned in the previous section, despite some of the women felt that the people have not appreciated any part of their actions, yet the impression from social stressors have exemplified that women’s focus on the significance of social support and being fitted in with people who are close to them. One of the women described their feelings when positive attention was provided by surrounded people.
“For sure, any person who receives help from others will be grateful and pleased. I feel like any other human being blessed when someone supports me. Especially those who help me in emotionally in my days when I am not in a good mood” (Mare, L16-L18)
However, a number of these women held in reserve indicating that some of the people’s support may overtake their privacy and confidentiality if their status is known to others as explained in the following category.
Disclosing their illness
Disclosure-related concerns with the decision of whether, when, and how to tell their HIV status to others remained as a source of fear and anxiety for some of the studied women. Among the studied women who argued deferent reasons for why they kept their health status secret. One of the interviewed women revealed;
‘Until now, I have not the courage to inform my illness to my family and friends, I need to remain unrevealed. Relatives and friends are the first people who give emotional comfort and support when it is necessary but there is a limit for every offer. Living with a long-lasting disease is not easy to be accepted by my close people and feel anxious’. (Zenith, L35-L37)
The potential risks that some women fear revealing their HIV status would place them for experiencing denial and rejection that affect their emotional stability.
Theme 4: Hopelessness
Satisfaction with their engagements of activities in a life time and their health outcome was noted and enlisted as a theme as they frequently mentioned it. The intensity of one’s being despair about life events was related to her perception about the chronicity of the illness which in turn associated with the disgraceful behaviors they develop through their course of depression experience.
Several women have identified their feelings of less safe and losing their hope of survivorship due to the fear of intensification of the infection and presumably the reluctance to prevent some of their immediate behavioral risk factors. This internalized perception of shame affiliated with personal attributes regarding expectations from the general public was described by some women in different contexts. One of them stated;
“It was a challenging time for me, I was desperate, thoughts were going in my mind. I had a fear that all people had turned their back to me and something bad is to happen shortly. I felt as though I don’t exist”. (Yordanos, L58-L60)
Among the interviewed women’s description of their behavior and individual bearings of attributing all problems to themselves has forwarded this category. A number of them have explained that their thoughts of negative self-image and fear of rejection from other people were disturbing their daily life. The intrinsic susceptibility revealed by these women on their thoughts of perceived negative social perception, followed by emotions of feeling guiltiness or shame was repeatedly mentioned by some of the interviewed study participants. One of the interviewed women stated:
“It is all my fault that I let some of them know that I am receiving treatment”. (Melos, L32-L34)
Worried about disease severity
They described as they experienced the mental disturbance when they hearing the results of their serological investigations depicting the drop of their immunity. This condition where women felt vulnerable to the threat of the disease severity and their belief of seriousness of the subsequent other illnesses that occurs as opportunistic infection (OI), is well-thought-out to the leading reason for the rise of the stressful condition among the women. Reciprocally, some women have revealed how they were emotionally distressed about hearing their decline of CD4 count. One of the participants has reported:
“I got frustrated overhearing my decrease in my immunity. I am terrified of getting another infection like the previous year. I changed everything, my eating habit, my sleeping pattern, quitting smoke. I don’t know. Perhaps I should consult the doctors”. (Meba, L23-L25)
In reality, the chronicity nature of the disease might have resulted in the emotional suffering for some of the interviewed women as they have explained how they were stressed about the disease casualty and perceived as life-threatening. The intense level of their psychological disturbance might be influenced by the individual’s perception of feeling the disease casualty as serious and fatal.
“I see! when you live with any lasting disease, it is for sure you get worried and fear as I do” (Serkalem, L4-L6)
The possibility of developing stress because of the disease’s unknown prognosis and its complex nature was acknowledged by many study participants. Women that personally assumed the cause of their emotional disturbance were due to the disease’s unique manifestations and the unpredictable consequences, and most importantly the chronicity of the illness.
“This treatment is helpful but sometimes I feel endless fear. This is a dangerous illness. It may happen to be fatal suddenly, I stay careful because I am scared and I don’t feel safe. (Fikir, L15)
Hence, these accounted for the frequent and persistent fear of dealing the long term seeking medical interventions, and uncertainty of their fate of life and unpredictability of the illnesses progress.
Theme 5: Dealing with emotional suffering
The interviewed women’s expressions were recorded based on the mechanisms of handling stress and dealing with life during their course of living with the disease. It conceptually combines the diverse individual feelings and choices of positive reframing like adopting behavioral change, emotional adjustment, self-acceptance.
Maintaining of self-management
Among the interviewed women’s explanation on their effort of maintaining self-management practice included regular medical check-up, communicating with the hospital’s consoler, and most remarkably some of these women’s intentions to seek treatment from traditional healers. They explained how they got relieved from their emotional disturbance after seeking treatment from traditional Therapy.
“Finally, I visited a local traditional healer and afterward I feel better” (Mahbuba, L19-L21)
Reflections of a positive attitude
Some women have described that realizing and accepting to live with the disease forever, provided them the strength and assurance of positive attitude and healthier thinking. Some of these women tried to justify their understandings of positive attitude, building hope, and adjusting with their emotions may help them cope with the stress. One of the interviewed women mentioned the importance of adjusting her emotions through the practice of positive thoughts and hope.
“This illness is the same with other diseases, as far as I accept and take the drugs, I can live longer. I am different from other people. This is how I believe, and when I convince myself, I get relieved”. (Meba, L75-L76)
Therefore, thoughtfulness of positive attitude mattered for the women’s coping style and their endurance toward the disease by interoperating negative sides of their life experience including social challenges to a remarkable optimistic situation.