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Do not Stigmatize Yourself

Onalethata Mpebe

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Before I got diagnosed, I thought I had my life in control. I always tested and wanted to keep my status negative because I saw what HIV/AIDS did to my best friend who died from an HIV-related illness. I did not want to go through the same thing.

We were so close; did everything together and shared everything. By the time she started getting sick, I was out of the country. She was very sick and was admitted in hospital and diagnosed with HIV.

When I asked her about her diagnosis, she denied everything and said she had low blood. I told her to be open with me, but she insisted it was low blood. We went on with the friendship though it hurt me so much that she did not trust me with the truth. I realized she was stigmatizing herself. She feared negative reactions and that hindered her efforts to accept her status, disclose, and adhere to medication. She continued to live behind a wall of silence and shame.

This fear of stigma and discrimination broke her confidence to seek care and support from her loved ones

I tried all my best to show her how much I cared for and loved her, but she never opened up to me. Along the way she left her medication and started drinking and smoking a lot. I told her how bad it was for her but she never listened. She lost weight, lost her sight, and then became mentally ill.  She was later admitted to Sbrana Mental Hospital where she passed on.

I was so sad when I heard of her passing. I felt like I failed her, like I could have done something to prevent her death, pushed her more to accept her status and adhere to medication.
The way my best friend passed was most painful. She was not supposed to die like that, especially when ARV medication is freely available. She died of silence, ignorance, denial, lack of knowledge and worst of all, spent her final days in a mental institution.

For as much as I will live, I will not want any of my friends or loved ones to die the way she did; not when I have so much knowledge and information about HIV/AIDS. In 2018 I do not think we should be fighting self or external stigma and discrimination.

We should arm ourselves with as much knowledge as possible. Whenever HIV/AIDS has won, stigma, shame, distrust, discrimination and apathy was on its side. But every time AIDS has been defeated, it has been because of trust, openness, dialogue between individuals and communities, family support, and human perseverance to find new paths and solutions. The beginning of the end of AIDS starts with me.

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Positive Living

“Let’s Break Stigma and Face the World”

Reginah

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Iam convinced that the change we need to end the HIV epidemic can only occur if more people living with HIV begin to participate in the response.

I want to appeal to those who have gone into hiding to come out and face the world. We are not part of the problem, rather we are part of the solution. We need to stand up and show people out there HIV is real, but it can be managed if you live positively by starting treatment early and taking care of yourself.

Recently, I met a group of students from a junior secondary school who surprised me with how much they knew about HIV. I realised how important it is to not wait until it’s too late to talk about HIV issues with our young people.

While we are busy trying to hide things from them, thinking that they are too young to understand, they are actually ahead of us. For instance, they asked me why adolescents (under 16) need consent from parents to test for HIV. They explained that this policy presents a barrier to youth knowing their HIV status. Sometimes youth encounter situations that put them at risk and need to test for HIV, but much of the time they cannot easily discuss this with their parents in order to get their consent for testing.

We still have some forms of stigma that are holding us back as a society from ending this epidemic. I have observed on many occasions the look on people’s faces when I talk openly about my status. This is usually followed by silence or unresponsiveness to what I say.

It is my wish to hear an influential person in my country, whether a pastor or any type of leader, talk openly about their HIV-positive status. It would make a big difference and change the public perception about HIV. Of course, going public with your HIV positive status takes not only bravery, but also commitment to a lifelong journey of living not only for yourself but for the community as well. All eyes begin to watch your every move.

For some of us, facing this challenge moulds us into stronger people, while for others, the challenges of going public become too difficult to overcome. That is why it is very important to find a support system before going public, so that one can be prepared ahead of time to respond to these challenges through proper counselling and support. Botswana Network of People Living with HIV/AIDS (BONEPWA+) provides this counselling and support free of charge through a large number of support groups that are based throughout Botswana.

Many people are not aware there is this kind of support near their homes, so when they are faced with challenges they break down or go into hiding. I have seen recent success in adopting what is called the greater involvement of people living with HIV. For example, this year the Treat All Champions project, which was supported by PEPFAR, provided a group of 30 of us with a platform to spearhead new activities addressing stigma, disclosure, ARV adherence, and other issues pertaining to people living with HIV. I am thankful to have served as one of the Treat All champions and I am continuing to encourage people to test and know their status all over the country.

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My Journey

Reginah

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My HIV diagnosis came at a time when stigma was still very high. In fact, when I first got the news, I sentenced myself to an early death. I let go of almost all my life plans and began living one day at a time. I became extra cautious of my looks for fear of being diagnosed by my friends before I could disclose to any of them. I wanted to make sure that even in my death, I would still look good.

Looking back, I think the best thing I did was committing to taking good care of myself. I didn’t wait for my CD4 to drop below 200, the cut-off point for ARV enrolment in those days. Instead, I convinced the doctor to start me on treatment right away, not realizing that 15 years later the world would recognize the crucial importance of starting treatment immediately at diagnosis. Since the adoption of Treat All in June 2016, every Motswana who is diagnosed with HIV can begin treatment regardless of their CD4 count. No fear, no illness, no waiting.

I am a powerful testimony of the benefits of early treatment. After 17 years, I have never experienced any decline in my CD4 count and my viral load has remained undetectable. Also, I have not fallen seriously ill.

The longer I live with HIV, the more I realize how important it is for me to be positive and stay focused. I have decided to participate in HIV-related activities in order to learn more. Even while working full-time as a teacher, I found time to help others living with HIV. This mission became so important that I resigned as a teacher in order to go work for the Coping Centre for People Living with HIV and AIDS (COCEPWA). Their programs motivated me to become a role model for positive change. I worked hard and was promoted in every new area I was assigned. I started counselling people on a voluntary basis, which I still do up to this day, and I feel bad if I can’t find time to fit someone into my busy schedule.

In 2006, I participated in Centre for Youth of Hope (CEYOHO)’s Miss HIV Stigma Free pageant in Orapa and was crowned Queen, which came with P60,000 sponsorship from Barclay’s Bank to use in my activities as Miss HIV Stigma Free. With these funds, I conducted an HIV testing campaign in Tlokweng where 365 people tested. I also got the opportunity to travel to Germany through UNICEF sponsorship to share experiences and find out what others were doing beyond our borders. I became a stronger and more motivated person through doing my part to help Botswana and the world to end the HIV/AIDS epidemic.

I have faced some challenges over the years. I lost some friends who were upset that I spoke publicly about my HIV status, but have gained even better friends who understand the kind of sacrifices I made for everyone in the world.

Even in my old age, I plan to continue talking to my colleagues about HIV and the good and bad experiences over the years. I will continue with my mission, encouraged and humbled by the support from my beloved Botswana Network of People Living with HIV and AIDS (BONEPWA+), the Ministry of Health and Wellness, the United States President’s Emergency Plan For AIDS Relief (PEPFAR) and other stakeholders like media houses.

If you want to live long and positively with HIV – like me – then you must accept yourself, start and adhere faithfully to your treatment, and take good care of yourself and your health. I am living proof that you can achieve your dreams.

You can have it all with Treat All.

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