HIV positive social activist and entreperneur Lebogang Brenda Motsumi shares her reflections on her 10 year journey of living with HIV.
Lebogang, tell us, when you first found out about your HIV status, what was your initial reaction?
Oh wow, I remember this day like yesterday, in fact, I can kind of feel what I went through on August 15, 2009 at 1 pm. The lady who had been testing me and my partner walked in and sat us down as we had been having a couple testing session. She said, “I have good and bad news.” So in my mind I thought the bad news is my then partner had bad news but unfortunately that is not how it all played out. I was then told that I am HIV POSITIVE. I had so many feelings running through my head, anger, denial, disappointment in myself and family especially my mom, fear of dying, fear of how people would react should they find out. I was scared that my body features would change and I would start looking a certain way. I wanted to die at that moment right there. I did try to commit suicide days after. I was in denial and even wanted to test again.
That’s deep! So what helped you accept your positive HIV status?
I was in denial for about two years. A month after finding out about my status I found out that I was pregnant. I went to the clinic they repeated the HIV test and it came out still positive. I was then told I have to start HIV treatment immediately, to help protect my unborn child and myself as my CD4 count was very low. I took my medication out of fear, not out of acceptance and understanding, why I have to and why it is important. I then defaulted from my treatment, meaning I stopped taking my medication, that then lead me to falling ill and ending up on my death bed. It is after the six months of being ill that I accepted my status because of how I looked, I had lost so much weight, at some point I could not walk, bath myself or feed myself. I had AIDS and that is when I accepted that I am indeed infected with the virus.
So how was the dating game for you when you shared your HIV status?
It was difficult, because I got a lot of rejection from men that I would meet at the time and it hurt me. Looking back and putting myself in their shoes, people reject you because of the fear that they will get infected, lack of knowledge around the virus, the fear of being discriminated against because they are associated with someone living with HIV, and I guess people have a choice whether they want to be with you or not. People have their own preferences of who they will date, and if it’s not to date someone living with HIV, then that is okay. I also learned that they are rejecting the virus in me and not Lebogang. It’s good they did, (lol!) because it prepared me for my soulmate.
You’ve been through a lot! Share some of the harsh realities of living with HIV?
The fear of death just never goes away, any sort of pain or cough you just consciously think, ‘what could this lead to.’ Taking medication, every day is not easy, it takes a lot of commitment and discipline. Sometimes you wake up and you just do not want to be living with HIV. You sometimes experience anger and still ask questions of why I am infected with the virus. Insecurities also grow especially when in a relationship because you feel that your partner could be with someone else. Having to change your lifestyle and eat healthier or exercise which should be what we all doing regardless of our status. Harsh reality that some people will still treat you differently and stigmatize you. Dealing with yourself – the stigma and internal issues.
Lebogang, we are even afraid to ask: Are there positive aspects of your journey with HIV?
My HIV Infection helped me find my purpose in life. Crazy, right? But it’s so true. After making it out of my death bed and going through counselling and getting support from family and friends, I then realised that I went through all I went through for a reason. I realised that I can turn my mess into a message, and use my pain to empower other people. I have been able to travel around Africa and the US just to share my story, and help influence policy makers in discussions they make towards HIV prevention. I have been honoured by the African Union as Youth hero 2015, and I sit as a board member for an international organisation which works on HIV prevention.
Talk about a silver lining! So what does Women’s Month mean to you as a young woman living with HIV in 2017?
Women’s month for me is where we are reminded of the power we have within us as women. It teaches us what great things happen when you work, stand and fight together as women. This year it was very symbolic, as I feel we should be feeding from the spirit of the woman of 1956 to fight against all social economic issues we face as young women. As young women, we need to stop bringing each other down, accept that we are different and start fighting and standing against all social ills affecting us.
True! So what are your thoughts on a cure ever being found for HIV?
With all the great new interventions on HIV Prevention yes, we will find the cure to HIV. While we try find a cure the education and empowerment of people living with HIV is our cure. And the prevention for those who are HIV negative.
Interesting! What are your thoughts on people who claim that an HIV cure has been found?
People will always take advantage of HIV patients and any other patients living with chronic illnesses, because they know how vulnerable the patients are. It is sad and heart-breaking because some people fall for these conspiracies, because of not accepting their status. People need to first check with a reputable medical doctor, or even the Department of Health when they get such information to check the sources out for authenticity. At the present moment we only have ARVs, which help with suppressing the virus in your blood and prevents it from making more copies and helping you live a longer and healthy life style.
Any last thoughts on how your journey with HIV helped you discover who you are?
Living with HIV has taught me so much about myself. I have learned to love myself, respect myself and live a life of purpose. After making it out of my death bed I realised I went through what I went through to help people with their HIV journey. I never had dreams or visions to be and do anything in my life, but now I have big dreams. I also know who I am and what I stand for.
Thanks for the chat, Lebogang, and all the best on your journey ahead! Ladies and gents, if you have any questions for Ms Motsumi please connect with her on Facebook.