Blog items for the Youth Force

By Amit Mohite

My positive status is just a part of my identity – I am much more than that. 

I was seven when my parents died in a car accident. I lost everything that night – not only my parents but also my school, my friends, my house and everything that constituted my little world. My sister and I were shunted amongst our relatives. It was only until 2002, when it was decided that I should be admitted to a hostel. As part of the routine admission procedure, I had to undergo an HIV test. I tested positive – and entered a new world, a world of stigma and discrimination, bewildering to a child of my age.

The hostel denied me admission, and this pattern was repeated over and over again. My excellent academic record meant nothing because no school or hostel would admit a child with HIV. By some good fortune, my uncle came to know about Manavya in Pune, which was the only orphanage in India at that time for HIV positive children. At first, along with the other orphanage children, I was sent to the village school, but we faced so much hostility there that it became impossible to attend. We were abused, spat on, our bags were trashed, and our books were torn by the village children who were encouraged by their parents. Eventually Manavya started an in-house school but my education came from weekend tuition in math and science by volunteers from Pune. When I was 14, I won a prize in a science exhibition at the prestigious Inter University Center for Astronomy (IUCAA) which inspired me to take my studies more seriously. I was the first student from Manavya to clear the 12th standard board exams but despite good scores, I struggled to find a college that would accept me.

I worked at odd jobs as a gardener, watchman, computer teacher and in pest control to fund my education and that of my sister’s. My efforts were rewarded in 2015 when I became the first student from Manavya to graduate. In 2014, I started MyRaddi.com, an online portal to collect old newspapers that would help destitute women make paper bags to earn a living. I joined an NGO working with AIDS affected people, as a group coordinator of the YPLHIV group. Through this work, I created a district level support group to provide a safe environment for adolescents living with HIV.

I have recently completed my Master’s in Development Studies at Azim Premji University in Bangalore. I engage with the HIV positive community through various NGOs as youth advocate. I travel abroad frequently as a youth advocate for youngsters with AIDS and speak at conferences and public events. I have come a long way from the child who was spat on for no fault of his own. I love challenges. I have no fear in disclosing my status anymore and I speak publicly to motivate people like me. My positive status is just a part of my identity – I am much more than that.This story is for all the children, adolescents, men and women who have been diagnosed with HIV to tell them they can live a normal life and that it is our responsibility to make life happier and safe for future generations.

By Rosa Tariro Mahlasera

When one is tested positive for HIV, one can think that the whole world has ended and that there is no hope for the future, whilst others see it as stepping stone to a better life. It is true that with the correct care and support, living with HIV can be made easier. However without this, the results can be catastrophic. One of the reasons for this is that emotional and mental stress experienced by people living with HIV (PLHIV) can cause different types of psychological problems[1]. HIV/AIDS imposes a significant psychological burden. PLHIV often suffer from depression and anxiety as they adjust to the impact of the HIV diagnosis and face the difficulties of living with a chronic illness. Living with HIV is challenging as it is associated with a number of significant and recurrent stressors including physical pain, side effects of ART, social stigma, and discrimination. ​

Mental Illness

The psychological impact  of HIV are synonymous with mental and emotional disorders. Mental health disorders are amongst the leading cause of health-related disability, affecting 10–20% of children worldwide and is predictive of mental health disorders and other morbidities in adulthood[2]. Mental disorders, if kept unmanaged, can claim more lives than actually recorded.

People living with HIV/AIDS are among those who are known to have great emotional needs and require enormous support for coming to terms with dire affliction status. The need for a better understanding of mental and emotional effects are essential, especially when it comes to its assessment and treatment. Children and adolescents living with HIV may face an increased burden of mental and behavioural health disorders compared to their adult counterparts. Other challenges faced by young people include; access to mental health services, the role of mental health challenges during transition from paediatric to adult care services and responsibilities, and the impact of mental health interventions[3].

Depression
Depression is the most commonly known and reported psychiatric disorder. Despite its high prevalence, depression is commonly underdiagnosed and consequently untreated in the general medical population. In primary care, physicians miss between one half to two-thirds of patients having depression. This is because depression is often viewed as an expected reaction to a medical disease[4]. Depression is a menace in the lives of adolescents and young people living with HIV[5] ​and is often triggered by various elements which include high cost of medication, stress, difficult life events, side effects of medications and disease progression.[6]

The prevalence of depression increases with the severity of symptoms. Thus, the more severe the disease is the more its effect on the patient’s mental health. However, the prevalence of depression decreases with the help of therapeutic interventions.

Depression is also a very important factor in the adherence of ART (medication that is used to treat HIV).  There is a high likelihood that depressed patients are more likely to miss at least one dose of ART regimen. Therefore early detection and effective treatment of depression goes a long way in improving the adherence to ART and improving the quality of life. ​Similar to how medical advancements help HIV-positive individuals live more productive lives, treatment for depression can also help patients better manage both diseases. These treatments can enhance both survival rates and quality of life in individuals suffering from both HIV and depression.

Fear and Isolation

Another psychological impact of HIV is fear. After a person is diagnosed with HIV, he or she often suffers from fear of being stigmatized or fear to disclose. This usually has traumatic effects. Therefore support groups and peer groups are necessary to control the effects of fear. Fear has resulted in many deaths of PLHIV.[7] This is so due to the unprecedented number of adolescents who have died in fear of failure to disclose and receive treatment. There is often fear of disclosure amongst PLHIV at the time of diagnosis.[8] When a person is found to be HIV positive it usually takes some time for them to come to terms with their HIV status. This period is characterised with emphatic, trauma and fear and this can overwhelm the personal living with HIV.

Stigma and Discrimination

Negative social consequences like stigmatization and discrimination is another problem that the patient also faces when disclosing his or her status[9] and can often lead to restricted options for marriage, employment and may even lead to divorce. The stigmatization and discrimination attached to the HIV is often a leading cause of patient landing up with severe fear of disclosure which can be disastrous.

HIV-related stigma is a key issue that impacts adolescents living with HIV across country-income settings by affecting quality of life, healthcare access, and the quality of the health care administered. Stigma and discrimination in the communities and as well as in clinics, are significant barriers to HIV treatment, often leading to negative consequences and poor adherence to medication[10]. Furthermore, HIV-related stigma is often intertwined with other sources of stigma, including those associated with mental health and/or substance use disorders. Depression and anxiety, which are two common disorders associated with HIV, are stigmatized on their own. Thus, a person living with both HIV and a mental disorder is considered to be compounded by a double burden of stigma.

Recommendations

Reflecting on statements mentioned above, it can be argued that the psychological impact of HIV arise mostly from a lack of support, care, knowledge and acknowledgment from family, friends and healthcare workers. Family and peer group support is very important because not only does it provide mental, economic and social stability to the PLHIV, it also decreases the stresses faced by them. Thus, it is recommended that countries around the globe should engage in policies that accommodate the social, economic needs of people living with HIV/AIDS. Involving more vulnerable communities is also important and this can be done through awareness campaigns that educate people on the psychological impact of HIV. There is also a need for schools that train healthcare workers who are specialists in psychological support of HIV patients as well as a need for facilities that can be utilised by any patient regardless of the illness for psychological support. Further, NGOs have play a big role in the overall health of patients living with HIV/AIDS. They form a bridge between government health services and PLHIV and also provide counselling and support to them. A person living with HIV needs support from the family members, friends and HCWs in order for him or her to overcome the psychological impact of HIV/AIDS. The support from these different groups of people will assist in being able to understand his or her HIV status, and also assist in enabling the PLHIV to adhere well to medication and accepting their HIV status. Due to this, it is recommended that more NGOs who are mostly active in the eradication of HIV/AIDS also engage in the psychological support and mental health of PLHIV.


  • [1]Shatkin J, Belfer M. The global absence of child and adolescent mental health policy. Child Adolesc Ment Health. 2004;9:104–8
  • [2] Kim-Cohen J, Caspi A, Moffitt TE, Harrington H, Milne BJ, Poulton R. Prior juvenile diagnoses in adults with mental disorder: developmental follow back of a prospective-longitudinal cohort. Arch Gen Psychiatry. 2003;60 (7):709–17
  • [3] ince M, Patel V, Saxena S, Maj M, Maselko J, Phillips MR, et al. No health without mental health. Lancet. 2007;370(9590):859–77
  • [4] Schulberg HC, Block MR, Madonia MJ, et al. ​The usual care of major depression in primary care practice​. Arch Fam Med. 1997;6:334–39. [​PubMed​] [​Google Scholar​]
  • [5] Bing EG, Burnam MA, Longshore D, et al. ​The estimated prevalence of psychiatric disorder, drug
    use and drug dependence among people with HIV disease in the United States: results from the HIV
    Cost and Service Utilization Study
    . Arch Gen Psychiatry. 2001;58:721–28. [​Google Scholar​]
  • [6] Leserman J, Petitto JM, Perkins DO, et al. ​Severe stress, depressive symptoms, and changes in
    lymphocyte subsets in human immunodeficiency virus-infected men. Arch Gen Psychiatry.
    ​1997;
    54(3):279–85. [​PubMed​] [​Google Scholar​]
  • [7] Carolyn M Audet Et al relationship between HIV, Stigma and self-isolation among people living with HIV in Tennessee
  • [8] Tylee A Et al jouth friendly primary care services; how are we doing and what more needs to be done?. Lancet 2007
  • [9] Raguram R, Weiss MG, Channabasavanna SM, Devins ​GM. Stigma, depression, and somatization in south India. Am J Psychiatry. 1996;53:1043–49. [​PubMed​] [​Google Scholar​]
  • [10] Katz, IT et al 2013 A systematic review of interventions to reduce HIV related stigma and discrimination from 2002 to 3013; how far have we come?
PDF download button

What is the Stories Of Resilience campaign ?

Download the document to find out more