A press conference session hosted by The Work For Change

Senior HIV activists who have not only helped shape HIV responses on the ground over the years, but also have been living with the virus for several years, shared their personal battle against self-stigma at a press conference session hosted by The Work For Change (www.theworkforchange.org) and partners at the 21st International AIDS Conference (AIDS 2016) held in Durban, South Africa.

Self-stigma or internal stigma (or internalized stigma) is an extremely neglected, yet critical issue. Almost all of the 50 people living with HIV (PLHIV) Stigma Index Reports, from different regions of the world, report high levels of self-stigma, ranging from 20% to 75%, manifesting in feelings of shame, blame, fear and denial.

Is this true?

Masimba Nyamucheta, of Zimbabwe National Network of People living with HIV (ZNNP+) said that while many studies report high rates of self stigmatisation of PLHIV, they do not give any recommendations on how to address it. So with support from Trocaire, the official overseas development agency of the Catholic Church in Ireland, a pilot intervention study based on Inquiry Based Stress Reduction Intervention (IBSR), developed by Byron Katie of The Work fame, was done. This meditative process, named ‘The Work’ revolves around 4 questions and a turnaround of experiencing the opposite of what the participant believes.

"You deal with one worrying thought at a time, ask and answer 4 questions - 'Is this true?', 'Are you absolutely sure that it is true?', 'How do you react when you believe it is true?' 'What kind of a person would you be without that thought?' Then turn the thought around and find opposites. For the first question 'is this true?' the answer is generally 'Yes', but for the second one they are not very sure and so things start changing, although slowly. Within 3 to 6 months of working with the people have given impressive results in terms of daily work, satisfaction, and dealing with depression”, explained Masimba.

There is a pill for HIV, but not for self-stigma!

Shaun Mellors from International HIV/AIDS Alliance recalled the times when growing up in a conservative Christian family and discovering his sexuality at a very young age, and also being diagnosed as HIV positive, he harboured within himself feelings of being bad, evil, promiscuous, and sinful, as that is what his family and society thought of PLHIV.

"It is even a harder struggle to address self-stigma than living with HIV. To deal with HIV I can take a pill, but I cannot take a pill for self-stigma. Overcoming self-stigma was a constant and often painful work for me - understanding it and finding options to address it. When you hear labels like 'fagget (gay person)' 'AIDS victim' or 'AIDS patient', it pushes a nerve and no matter how confident you feel it breaks you down, as it did for me. Looking at myself now at the age of 51 years, I am okay. Yes I am a 'PLHIV fagget', as some people may think. But it is much easier to not get affected by it now than it was 20-30 years ago”.

Reality check: Is stress due to assumed thoughts?

Cloudie Farikai of ZNNP+, Zimbabwe, when first diagnosed with HIV, blamed himself, and blamed God for letting this happen to him. He became withdrawn, quiet and suffered from inferiority complex. But doing IBSR changed his entire perspective. He found it to be a very powerful yet simple tool to fight self-stigma. It empowered and enlightened him and made him feel equal to everyone else. It made him see that most of the stress that we face in life is due to assumed thoughts that we have, which we are not even sure of.

"Most of the time we are our own worst enemy, as we start looking down upon ourself due to self-stigma. You do not need to seek approval from other people. The moment you start to please others you start losing your own self. You can never ever satisfy all the people all the time. So it is better to do what you like. Everyone is entitled to his/her opinion. But I think that if I disclose my status to my relatives they might shun me, laugh at me, mock me, I am self-stigmatising myself."

Is it one or multiple layered amalgam of self-stigma which is stopping us from engaging in life?

Sophie Strachen from Positively UK also identified with self-stigma in her early years of living with HIV. It resurfaced a belief that she was fundamentally a bad person. The shame she felt at her diagnosis was very raw and she did not understand why she had these feelings of guilt. In her 13 years of living with HIV, she has had to struggle a lot to finally reach self-acceptance and not be as impacted as she was in those early years.

“Most of the times we are dealing with multiple layered stigma. One of the things that I have struggled with is the incongruence in my life - being open with my HIV status in the sector, yet my family members not knowing of my status for many years. Even though this dishonesty was a form of self-protection, it made me feel uncomfortable. So the freedom I got through self-acceptance liberated me. I understand that it is not your shame to be carried about - you need to hand it back to society. Today I do not have any self-stigma, but I see it in other people - they are not engaging in life because of the shame they are carrying within. And it is important to educate people how to change that”.

Shame, blame, fear, denial...

Benjamin Collins works with a think tank in London called Reshape. He shared his early days when he became a PLHIV in 1981. “When the test became available, me and my friends made an upfront deal that we would get tested and that we would disclose our status to our family and others. And we did it. That was in 1986. So the idea of being self-stigmatised with HIV just does not register with me. But in those days in the USA, if I had been open about being gay, I would have been in danger of my life. So my life was really about being manipulative. I did a lot of therapeutic interventions and ended up doing well. I have had a lover husband for 24 years now and am happy in my life and work”.

The recent killing of UK’s Labour Party MP Jo Cox for taking a stand against Brexit, shook Benjamin with shock and fear. “As Brexit won, I felt shame, blame, fear, denial. I used to be a Londoner, but now I was a foreigner. I felt unprotected. We need to have safe places where we feel connected with people. What are you going to do if you are on the bus and somebody attacks someone? Well, you do not go against the attacker but you go with the person who is being attacked. So we are now learning to take care of each other. It is about building our strengths rather than fighting the other person."

Do not sow shame-poison in children

Jogendra Upadhyay of Gujarat AIDS Prevention unit (GAP) ISRCDE in India shared his experience of stigma and discrimination in children and adolescents living with HIV. They face stigma from family, society and school. This discrimination from early childhood leads to self-stigma. It has negative effects on their treatment adherence and education and overall development. Self-stigma roots within deeply in children and affects at every level of their life. Discrimination for girl child is double due to her gender as well as HIV status. In May 2016 Jogendra visited a family where a brother and sister both are positive and eligible for antiretroviral therapy (ART). But the family was ready to start ART for the boy but not for the girl. They openly said that being a girl child she is already a burden on the family and it is better for her to die early.

Loknath Mishra of ARUNA shared the plight of adolescent wives of migrants from Orissa, a southeast coastal state of India. Many of these who migrate to other states in search of work, get infected with HIV. By the time they are 21 they get married to a 13-14 year old girl, and transmit the virus to her. These young brides become young mothers and then young widows. "I have seen the self-stigma amongst these young adolescent mothers. They live with the fear of death, and the blame by their in-laws. So even when they get infected they either do not go for testing, or do not go regularly for their medication. This has resulted in thousands of deaths and thousands of children becoming orphans. It is important to understand how self-stigma interferes with how an individual will seek healthcare and other services for her/his own well being.

Self-stigma plays a powerful role in silencing us...

Although inherently connected to social stigma and discrimination, self-stigma needs to be understood and addressed in its own right. This issue is under-recognised, under-researched and imperfectly understood, even though it plays a powerful role in silencing us and keeping us fearful, ashamed and blocks us from testing, treatment and support. Self-stigma has to be addressed for true empowerment of communities and for successful HIV programmes.

This session at AIDS 2016 was co-hosted on 21st July 2016 by The Work for Change, International HIV/AIDS Alliance, Global Network of people living with HIV (GNP+), European AIDS Treatment Group (EATG), Trócaire, Zimbabwe National Network of People living with HIV (ZNNP+), IHP/ReShape, Connect, Positively UK, AIDS Society of India (ASI), Vote For Health, Center for Supporting Community Development Initiatives (SCDI) and CNS (Citizen News Service).