Next week it will be 40 years since the first cases of what would later be called AIDS were reported. Yet after all this time, the issue of stigmatization still exists. Vice Versa columnist Eva Nakato knows exactly what it means to live with the stigma, having been born with HIV. She shares with us her personal experience, how she overcame them, the lessons learnt along the way and what she’s teaching her son.
In the early 1980s, the southern part of Uganda was hit by a ‘strange’ phenomenon. Being at the border of Uganda and Tanzania, it was believed that a group of Ugandans had ‘misbehaved’ having crossed to the Tanzanian side. In retaliation, apparently, a ‘jinni’ (bad omen, supernatural powers) had been sent to the Ugandans and their respective communities.
The ‘Silimu’ Disease
Months later, hundreds of people were dying under unclear circumstances. However, the deceased persons presented a similar symptom; rapid weight loss shortly before their death. Hence, the locals named this new disease ‘silimu’, a phrase coined from the English word ‘slim’ due to the small physique of the patients.
Crossing over to the western part of the world, the US Centres for Disease Control and Prevention (CDC) had on 5th June 1981 officially reported the first five cases of what would later become known as ‘Acquired Immune Deficiency Syndrome (AIDS)’ among some gay men. This report heralded the HIV/AIDS pandemic.
Coincidentally, it was the same scourge that had hit the southern part of Uganda. Nonetheless, even after government intervention, the locals continuously associated this ‘strange’ illness with witchcraft or even bad luck on the side of the victims.
Stigmatization from Relatives
Consequently, many families started abandoning their own relatives and migrated to other neighbourhoods once one of them started showing signs or symptoms of ‘silimu’. This was done to avoid transferring the bad luck to the rest of the family members. This was the origin of stigma and discrimination against People Living with HIV/AIDS (PLHIV) in Uganda.
Nearly 40 years later, the stigma still exits and is both internal and external. External stigma manifests in the negative attitude and belief towards People Living with HIV by labelling them as socially unacceptable. Other ways are by making judgments on those who get infected because of their perceived ‘wrong’ life choices, making moral judgments about those trying to prevent HIV transmission, to mention but a few.
Internal stigma is characterised by loss of hope, self-condemnation and suicidal thoughts especially among those patients who have just tested positive.
Lack of Proper Awareness
Discrimination involves treating people living with HIV differently than those without. The behaviours that result from those attitudes or beliefs, like distancing oneself from people living with HIV, health care providers refusing to treat them, not having casual contacts with them and referring to them as HIV Positives or HIVers, to mention but a few.
My twin sister and I were born with HIV to a HIV Positive mother who had apparently contracted the virus through blood transfusion.
As a young woman born and living with HIV, I have had my fair share of stigma and discrimination. The more people found out about my status, the more they stigmatised and discriminated me.
About 3 years ago, a job opportunity came up and I attempted take it on. However, a friend of mine who was already working in the organisation immediately disclosed my status to the team leader. The team leader suggested that I don’t take the job since some of his employees had seen me on TV before from where I had disclosed my status. Apparently, they were going to make my life uncomfortable. Consequently, I painfully abandoned the opportunity despite my dire need for a job then!
As teenagers, a neighbour once told her sons to stop being around my twin sister and I because she suspected we were HIV positive. When the boys asked their mother how she got to know about our status, she simply stated that she had always seen my twin sister and me travelling to town on some specific days of the month. To her, it was obvious that we were heading to the hospital to pick up our ARVs!
Also, whenever I would have misunderstandings with my friends they would use it as an opportunity to use demeaning remarks like ‘…after all you’re HIV positive, what can you do?’ Some of my boyfriends also considered me the ‘desperate one’ and hence they hardly valued my inputs in some of the relationships.
Over time, I have developed a thick skin and I have been able to overcome the stigma and discrimination that comes with my HIV status. Unfortunately, some of the People Living with HIV are yet to undergo this transformation as well.
Change of Attitude and Behaviour
As we continue to do what we do, we should note that the attitudes and behaviours that discriminate and stigmatise people living with HIV are extremely dangerous. I believe we can continue talking about HIV openly especially in rural areas to help normalise the subject and help correct misconceptions about it. This will also help people learn more about the dangers of HIV stigma and discrimination.
As a parent, I plan on teaching my son how to treat and live around people living with HIV. I know for sure that one day he will come across interviews of me sharing my story and I would like to prepare him on how to deal and respond to what people will say.
Despite all the stigma and discrimination, I have lived a very normal life. I have studied, graduated and now have a healthy HIV negative son thanks to the effective prevention interventions like Prevention of Mother To Child Transmission (PMTCT) and Anti-retroviral drugs (ARVs), among others.
In this journey, I have learned to respect and treat people the way I would want to be treated.
Vice Versa Global is a platform spearheaded by young African journalists who are keen on telling the African story from the youth’s point of view by creating socially conscious content through vlogs, columns, video, articles and discussions in order to share ideas and spark dialogue about social change. Follow us on Twitter and Facebook.
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It is very good information about some myths regarding the curing of both HIV and hepatitis C infection. It was somewhat useful for many including me. It is a must-read blog to explore the new info about HIV and hepatitis C infection curable medicines. Keep it posting these kinds of informative blogs in the future!
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