How HIV Stigma affects Indian Women Physically & Mentally

A study has revealed that women living with HIV in West Bengal face intersectional stigma.

According to a study by Dr Reshmi Mukerji, this impacts their mental health as well as their physical health, leading to poorer HIV treatment outcomes.

Dr Mukerji questioned 31 HIV-positive women and 16 service providers in Kolkata on domestic violence, intersectional stigma, mental health and coping mechanisms.

On average, the respondents have been living with HIV for eight years.

The majority 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.

Impact on Mental Health

Many women keep their HIV status quiet to avoid discrimination. But this fear of disclosure has stayed with them.

One 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.”

Another woman who was physically abused by her husband said her in-laws made her HIV status public and justified the domestic violence.

She explained: “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.”

The study highlighted that service providers referred to women’s suffering as mental health problems.

However, the women did not see it as a mental illness.

Some older widows fear that no one will be there to care for them if they become 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.”

For younger widows, they face social restrictions.

A 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.”

One woman whose husband died shortly after her HIV diagnosis described her plight:

“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.”

For sex workers, they have the feeling of hopelessness because they cannot work due to HIV stigma.

Some are belittled, even by fellow sex workers.

A sex worker with HIV said:

“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.”

Impact on Physical Health

HIV-positive respondents felt that their physical health is impacted as well as their mental health.

Despite having the sexually transmitted infection, many reject antiretroviral medication, as one woman said:

“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.”

The study’s authors stated: “Not adhering to medication was their way of taking control of a seemingly uncontrollable situation.”

Domestic abuse also has an effect on HIV-positive women not taking medication.

“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.”

Chronic stress is known to have an impact on the immune system.

Women living with HIV said they felt that stress due to stigma and violence caused their CD4 counts to fall, which then caused them to become physically 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.”

Women expressed that when they felt stressed or anxious, they experienced physical manifestations attributed to stigma and violence, impacting their mental well-being.

For instance, a 26-year-old woman detailed severe headaches following HIV-related verbal abuse from her husband, stating:

“If I get stressed… my head hurts so much that I could not tolerate it, but still he will not listen.”

Likewise, a 39-year-old woman shared that she had experienced significant weight loss due to stress and anxiety following her husband’s death and subsequent mistreatment by her husband’s family.

Another Indian woman, aged 28, mentioned losing her appetite and experiencing insomnia due to violence from her husband, compounded by the need to hide it due to societal stigma.

The researchers advise against categorising individuals as having a ‘mental illness’.

Such a diagnosis could lead to stigmatisation, exacerbate the intersecting stigmas faced by women, and potentially discourage them from seeking treatment.

Moreover, mental illness is a legal basis for divorce under the Hindu Marriage Act 1955 and Special Marriage Act 1954.

This places women identified as mentally ill at a heightened risk of divorce and abandonment by their families and communities.

Women respondents had expressed their experiences as a normal reaction to the stigma and violence they faced.

The study’s authors said: “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.

“An understanding of lived experience and the use of non-stigmatising language should be encouraged in clinical practice.

“Healthcare providers need to be aware of the risk of using the label of mental illness.”

It is also recommended that all women should be offered mental health screening and help.

Approaches aimed at reducing HIV stigma must consider an individual’s stigmatised and discriminated identities.

Psychosocial and psychological interventions should be customised to align with the specific local and individual contexts and requirements.