“Pain in my heart”: A double burden.

Ruth was a pregnant participant who had received an HIV diagnosis during a past pregnancy over two years ago. When Ruth and others described how their PND presented itself in their lives, they often described their culmination of symptoms causing “pain in my heart.” When talking about her depression during her interview, Ruth said that her heart was troubled; her depression would not stop in her heart and was persisting because it had come from the combination of her HIV diagnosis, pregnancy, and marital issues. Other women used phrases referring to the heart. Women used this phrase of having pain in their hearts to describe how depression felt to them and how this feeling persisted in their heart throughout time, disrupting their lives and not allowing them to tend to other tasks. When a prenatal woman that had been diagnosed in her current pregnancy was asked if she knew about depression, she described her own experience as the following: “from the time I started my HIV treatment, I feel a lot of pain in my heart. It’s not like I am worried about anything, but I just feel so much pain in my heart, as if I have been shocked by something” (prenatal, living with HIV <6 months). This pain persisted because she did not feel that she could confide in anyone about her HIV status and because her husband had abandoned her once she disclosed her diagnosis. A woman diagnosed with HIV within the last two years said that she kept feeling an overwhelming pain in her heart that kept her from working and that this pain stemmed from her overthinking and worry. This worry was about raising her children alone, as her husband had abandoned her after she became HIV-positive. Importantly, women explained that understanding how others felt in their heart and helping other women strengthen their heart were potential mechanisms for addressing PND.

The persistence of women’s depression was often expressed through women’s double burden of living with both HIV and PND. This double burden was closely tied to having an unexpected HIV diagnosis, with the diagnosis making the depression harder to handle. During her interview, Ruth described the persistence of her depression and the pain in her heart as a large burden. Discussions of this double burden were most common when women were asked to imagine a woman with PND and HIV and one with only PND. HIV and PND were both thought of as diseases, one being physical and one being mental: “one of them [with only PND] is just depressed but her body is okay whereas the other one [with both PND and HIV] is depressed and her body has viruses” (prenatal, living with HIV over 2 years). All women said that living with both would be more difficult and would be different than only having PND.

Women also expressed that they could handle their PND more easily if it did not co-occur with HIV. As a woman’s HIV diagnosis was a key contributor to her developing PND, without this diagnosis, many women believed they would not have developed it or would have experienced a milder form. One woman stated that receiving an HIV diagnosis made her PND worse: “you get very depressed because you think of the problems you already have at home and then you have even more problems now. The depression increases” (postnatal, living with HIV over 2 years). Without an HIV diagnosis, PND was also perceived to have an endpoint whereas PND stemming from HIV was expected to be lifelong because the primary cause (i.e., their HIV status) was also lifelong.

Ruth and others felt that this double burden combined with stigma and marital issues led them to have suicidal thoughts, as they claimed that committing suicide would rid them of all of their problems. Fourteen out of 24 women (58%) expressed suicidal ideation and such thoughts were more common among currently pregnant women and those lacking support from their partner. Of the 14 women with suicidal thoughts, nine had passive or low-risk suicidal ideation and five had active or high-risk suicidal ideation.

In addition to suicidal thoughts, women also revealed that their burdens could affect their ART adherence. Ruth explained that “if you are depressed, you cannot manage to do those things [take ART medication] because of the depression and you’re hurt in your heart every day, because when someone is depressed the heart always hurts. For you to be bothered about your life, you just say whatever happens will happen.” Women’s PND resulted in hopelessness, which could lead them to either forget to take their medication or to lack the motivation to go to the clinic. At the same time, Ruth said that women often think too much when they have PND, and it is harder to remember one’s medication when one has so many thoughts.

Yet, suicidal thoughts did not result in suicide attempts and ART barriers did not result in women’s lack of adherence to ART for Ruth and many others. High reported adherence was most common among women in urban areas and among postnatal women. Ruth was motivated to take her ART “so that the baby [she was] expecting should not go through the burden that [she was] going through” by contracting HIV. She also felt responsible for her other children and wanted to remain healthy so that she could raise them. Adherence was often made easier when women had disclosed their status to others, as they then felt accountable to those to whom they had disclosed and felt encouraged to accept their HIV status and begin and remain in treatment.

Intersecting identities: HIV-positive, pregnant, and in an unstable marriage.

Ruth had known she would be tested for HIV as part of routine ANC, but did not suspect that she had contracted HIV. In discussing her HIV diagnosis, she stated that “depression is inevitable because you have been diagnosed with HIV at a time you were not expecting it.” Ruth found it difficult to accept the reality of having HIV when she did not anticipate a diagnosis.

For Ruth and others that received their HIV diagnosis during pregnancy, their diagnosis compounded pre-existing anxieties about being a mother, predisposing them to develop PND. One woman in her fourth pregnancy began “wondering how [she] would be able to look after [her children] with the HIV and [kept] wondering if this was the end of [her] life” after her diagnosis (postnatal, living with HIV 1–2 years). She continually expressed her worry about her diagnosis and about how she would be able to parent while living with HIV.

In addition to being pregnant when receiving her diagnosis, Ruth learned that her husband was also HIV-positive but had been hiding his diagnosis from her. Upon learning of Ruth’s diagnosis, her husband acted as though she “went wayward and brought the virus into the marriage.” Like Ruth, most women were in relationships in which they believed they had contracted HIV from their husband. Yet, most women’s husbands reacted negatively to their wives’ HIV diagnosis and denied their own responsibility. Women’s HIV diagnoses combined with their pregnancy often exacerbated preexisting marital issues and created new ones. These marital issues meant that women lacked social support from a partner, contributing to them both developing PND and accelerating and exacerbating it:

“I sometimes do not talk to him because something is troubling me. To think the same person who transmitted the virus to me is the one who is insulting me…”

(prenatal, living with HIV < 6 months).

For Ruth, the combination of not anticipating her HIV diagnosis, being pregnant when she received her diagnosis, and unknowingly contracting HIV from her husband resulted in her feeling overwhelmed and like her challenges were insurmountable. It was then difficult for her to accept the reality of having HIV in the midst of her overwhelming circumstances. Many other women noted an inability to accept an HIV diagnosis or a denial of their diagnosis as contributing to feeling depressed. While an inability to accept a diagnosis and an active denial of a diagnosis may be different, women used these two descriptions interchangeably.

Stigma and social support.

In addition to their marital issues, many women felt stigmatized and unsupported by others. One woman stated that “people who can encourage us to live a life with little depression are rare” (prenatal, living with HIV over 2 years). Both HIV and PND were emotionally charged topics in women’s communities and women often received mixed reactions from community members. Mixed or negative reactions largely stemmed from others not accepting women’s HIV diagnosis, meaning that they did not accept the women as their full selves with an HIV diagnosis. One woman directly linked HIV stigma to her development of depression: “I sometimes ask myself if [my community knows] about my HIV status and if that is the reason they treat me in the way they do. I then get depressed because I think too much” (postnatal, living with HIV over 2 years). Women feeling stigmatized by others often led to their overthinking, which was both a cause and symptom of PND.

While HIV stigma was a prominent determinant of some women’s depression, others felt directly stigmatized for their depression because they felt that they were perceived as a bad mother. Women were sometimes warned that they “shouldn’t be sad, because the baby [will] also be sad” (prenatal, living with HIV over 2 years), or were described as sick, mad, in trouble, lazy, or panicked. Importantly, once women were stigmatized due to their PND, they sometimes began to worry that people were stigmatizing them due to their HIV status even if people did not know their status, which created an internal cycle of worry. Still others felt a lack of love or ambivalence towards them once people knew about their HIV or PND. Ambivalence towards women in these circumstances was often as negative as active stigmatization, as women were not supported and thus unable to move towards accepting their status and lessening their PND.

Yet, some women found sources of support. Linked to their denial or struggle to come to terms with their HIV status, women did not immediately disclose their HIV status or feelings of depression to others. Rather, they turned to prayer. Fourteen of the 24 women listed prayer as a source of support in response to their HIV diagnosis. One woman said that she “would just pray for God to remove [her] worries because…He is the one who can remove [her] anxieties” (prenatal, living with HIV over 2 years), indicating that both she and those around her could not remove her anxieties related to her HIV.

After prayer, many women turned to one or two specific people for support. Ruth confided in one of her in-laws, and most women talked to a family member, friend, or their husband. While most did not find support in their husbands, four women found encouragement in talking with them, including two women who noted that their husbands were HIV-positive. Women that had been living with HIV for longer were more likely to have found sources of support. Additionally, if women knew others that were living with HIV, they were likely to serve as sources of support.

Throughout women’s discussions of social support, they described social support as being composed of three components: interaction, encouragement, and offloading or sharing worries. Interaction was seen as a distraction for women to stop worrying about their HIV and PND. Encouragement was discussed as both needed by women and provided by them to others so that “[they] get strengthened in [their] heart” (prenatal, living with HIV over 2 years). Encouragement thus helped their depression and their worries. Offloading was identified as a critical component for preventing suicide. Some had not found anyone that they could share their worries with: “I have never met anyone whom I could share my worries with… sometimes I get depressed but can’t tell anyone” (postnatal, living with HIV over 2 years). Thus, women needed a combination of all three components of social support, as they all served different functions in alleviating PND.