Providers should avoid the label of mental illness as it may compound intersectional stigma
Women living with HIV in West Bengal (an eastern state of India) face intersectional stigma due to HIV as well as their other marginalised identities such as being a widow or a sex worker. This impacts not only their mental health, but also their physical health and leads to poorer HIV treatment outcomes, according to a qualitative study published in PLOS Global Health by Dr Reshmi Mukerji of University College London and colleagues.
The study authors present a model of stigma amplification: “Experiences of intersectional stigma and violence lead to poor mental health, which leads in turn to poor physical health, which feeds into the stigma cascade, as unwell and unproductive individuals are stigmatised further.”
The qualitative study was conducted in 2020-2021. Mukerji interviewed 31 women living with HIV and 16 service providers in Kolkata (the capital city of West Bengal) on domestic violence, intersectional stigma, mental health, and coping mechanisms. The women in the study came from both rural and urban areas, half were over the age of 35 and they had been living with HIV for eight years on average.
An individual respondent often identified with more than one marginalised identity. One-third of the respondents were widows, one-third were separated or single, over a quarter only had daughters, one-sixth were sex workers, and one-fifth belonged to a religious minority.
Intersectional stigma and mental health
Women used specific phrases in Bengali to describe intersectional stigma, such as ‘chinta’ (worried or troubled) or ‘mon bhenge giyeche’ (mentally or emotionally broken). But service providers often categorised these as ‘trauma’.
Many respondents kept their HIV status secret to avoid stigma and discrimination. So, the fear of disclosure stayed with them. A 40-year old woman, who was separated from her husband, said:
“Yes, the fear stays. What if someone says something… What if they say to my face ‘you do not come to my house’… I live with that fear within me.”
A woman whose husband did not have HIV had her HIV status made public by her husband’s family, who justified her violent husband’s actions. She described her experience of HIV and gender-based violence:
“They tell me ‘I heard that you have this AIDS disease’. It hurts to hear all that. I had the disease, but I was dealing with it on my own, I was working, I was fine, there were no worries. Now I cannot sleep at night, I do not have an appetite, a mental tension has entered me… They even beat me.”
Interestingly, the study shows that service providers referred to women’s suffering as mental health problems, but women themselves did not see it as a mental illness. They used terms like ‘dukkho’ (sadness) or ‘koshto’ (pain) and hopelessness to express their profound sadness.
Some older widowed women expressed their haunting fear that no one will be there to care for them if they fell sick. A 51-year old woman said:
“I feel very sad. Alone, completely alone. Even when I go out on the streets I feel alone.”
Younger widowed women faced issues with social restrictions, as this 33-year old woman explained:
“But because I do not have my husband, so I cannot dress up like married women do… So, when I see others like that it makes me sad.”
A 36-year old woman who lost her husband soon after her HIV diagnosis described her turmoil:
“One time I was so disturbed that I was just not able to sleep at night. My husband had died and my aunt… used to verbally abuse me so much [in collusion with the in-laws]… that I was just not able to fall asleep at night. I left the house at three in the morning, locking the door behind me. I had left the house. Then I thought let me do something [suicide], what the heck I do not feel like living anymore.”
Those in sex work described their feelings of hopelessness at not only ageing, but also not being able to work because of HIV stigma. Some were demeaned, even by other women in sex work.
“What hope will I see? I do not have any hope. All my hopes are gone.”
“Some say the body is riddled with worms, some say there is a bad odour… ‘You do not stand next to me’… They will make you do the work and then say all that. Then I feel if only God took me away right now then I would go right away.”
Intersectional stigma and physical health
Women respondents felt that it is not only their mental health but also their physical health that is severely impacted by intersectional stigma they face. Many women rejected antiretroviral medication, as this 50-year old woman described:
“I would not take my medicines. I thought I would finish my life… my mother would say ‘you have had your rice, take your medicine’… when mother would go to the bathroom, I would put the pills under the mattress… because I did not want to live.”
“Not adhering to medication was their way of taking control of a seemingly uncontrollable situation,” analyse the authors.
Domestic abuse could also impact adherence:
“When I would fall asleep after a whole day of fights, I would feel upset and feel down, at that time I was supposed to take my medicines… sometimes my husband would come back from the truck early in the morning, or at midnight... maybe he would leave or cause problems at home… there were several times I had gaps in taking medicines.”
However, service providers perceived these actions as mental health issues, and not as a reaction to the stress of stigma and violence, observed the study authors.
Chronic stress is known to have an impact on the immune system. Women living with HIV agreed: they felt that stress due to stigma and violence caused their CD4 counts to fall, which then caused them to become physically weak.
“If people think about it [stigma and abuse] they may fall ill, if I am doing well, I might fall ill… If the CD4 is high, then from worrying the CD4 falls, once the CD4 falls, slowly you become weak.”
However, service providers felt that falls in CD4 counts were because of non-adherence to treatment.
A counsellor at an antiretroviral therapy centre succinctly said:
“If there is tension at home that has an effect. HIV patients are always told to be happy, not worry, so if that space is disrupted, then there is definitely a physical and mental health impact of that… maybe they skip meals, they do not eat properly, they do not take their medicines properly, they do not feel like it.”
When women felt stressed or worried, they said in their own language that they experienced physical symptoms due to stigma and violence which was affecting their mental health.
A 26-year old woman described severe headaches after HIV-related verbal abuse from her husband: “If I get stressed… my head hurts so much that I could not tolerate it, but still he will not listen.”
Similarly, a 39-year old woman said that she had lost a lot of weight due to stress and worry after her husband’s death and subsequent abuse from her husband’s family. A 28-year old woman said she lost her appetite and could not sleep due to violence from her husband, and also having to hide it all because of stigma.
Avoid the label of mental illness
The study authors caution against using the label of ‘mental illness.’ A diagnosis could itself be stigmatising, may compound intersectional stigma faced by women and could deepen their non-engagement with care.
Mental illness is also a legal ground for ending the marriage under the Hindu Marriage Act 1955 and Special Marriage Act 1954. This puts women labelled as mentally ill at a greater risk of divorce and being abandoned by families and communities.
Women respondents had expressed their experiences as a normal reaction to the stigma and violence they faced. “Not being labelled as mentally ill helped women experience their mental health as an outcome of negative experiences rather than as an additional stigmatised illness to worry about,” observe the authors.
“An understanding of lived experience and the use of non-stigmatising language should be encouraged in clinical practice,” the say. “Healthcare providers need to be aware of the risk of using the label of mental illness”.
The study authors also recommend that all women should be offered mental health screening and help. HIV stigma reduction approaches need to take an individual’s stigmatised and discriminated identities into account. A battery of psychosocial and psychological interventions should be tailored to suit local and individual’s context and need.
References
Mukerji R et al. “I hope I die. That is what I hope for”: Qualitative study of lived experiences of mental health of Indian women living with HIV experiencing intersectional stigma. PLOS Global Public Health 3(12): e0002075, 2024 (open access).
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