John Mwikwabe, a peer educator with the Kenya Red Cross Naivasha Sub Branch, interviewed Celestine Ndege, a fellow peer educator, about what it’s like living with HIV and how her status affects her work.
I first met Celestine Ndege in 2008, which was about the time Kenya was trying to accommodate the masses of internally displaced people, at one of the camps in Naivasha. We were both volunteers with Kenya Red Cross; she was volunteering under the Health Department and I was a volunteer in charge of warehouse and relief.
Since that time, much remains the same: Celeste is still creating awareness on various health issues, educating people about HIV, visiting support groups, talking to couples about various health issues, and counseling. She lives in Gilgil District but her work takes her across the country.
Celestine is a mother of two daughters. She is very strong-willed, and her determination has made her a great inspiration to both the young and to the community at large. There is one thing that makes her special apart from being an agent of change in her community: she has been living with HIV for the past 10 years. She has managed to live a very positive life regardless of her status and only started using ARVs a month ago after her doctor advised her to do so.
As long as I’ve known her, she has never had any problems revealing her status to the public; she speaks out about it and shares her experience with anyone who lends her an ear. We have engaged her in most of our counseling and testing initiatives through theater, life skills seminars, HIV and AIDS initiatives, and as a counselor.
When I approached her about sharing her story on this blog, I had no doubt that she would be thrilled about it, and I was not wrong. We wanted to share her story so that people living with HIV and AIDS would be inspired to know that it is not the end of the world. We also hope that Celeste’s story will encourage people to stop stigmatizing those who are living with HIV and AIDS. And finally, we hope that those who do not know their status will gain the courage to get tested, with the knowledge that whatever the results are, they can also deal with their status and live a long life.
I had a chance to ask her the following questions.
How long have you known you are HIV positive?
Celestine: For the past 10 years. I have lived a healthy life taking into consideration that I just recently started using the ARVs this year due to some health issues.
How did you discover that you were HIV positive?
Celestine: I used to have a recurring history of STIs, and every time I got one, I would get some medication for them. One day, though, I decided to go for testing and actually learn my HIV status. I had a rough marriage then, and my husband wasn’t the trusting type so I decided to get tested for my sake and the sake of my family. So one day, after a long discussion with myself, I got up and visited a VCT center, and that is how I found out.
Why did you decide to disclose your HIV status?
Celestine: After going through all the stages of depression, denial and anger, I realized that keeping it to myself would somehow lead to self destruction. So I decided to share my story, and of course it was not easy. Doing so was perhaps the hardest thing that I have been faced with. Stigmatization was high in Gilgil and the whole country, so you can imagine how this would have an impact in my life. But I decided that since I had the infection, I had an opportunity to bridge the gap in the way people perceived things and this was that moment. I saw this as one part of my healing process, so I decided to share my status with the world.
How did your first disclosure happen? Was it voluntary, coerced, planned, unplanned? Did someone disclose your status –with or without your consent?
Celestine: The first time I disclosed my status, it was scary and a little embarrassing but I did it willingly. I was not sure how to do it. My husband had been against going to the VCT to get tested. I recall during that time we had been in a quarrel and I had gone to stay with my sister. I asked him to go with me toNakuruPark for an outing, and that was when I told him I told him.
As for my kids, they came to find out in a way that I had not planned for. We had a fight with my husband and he blurted it out during our confrontation; my son heard him say that I was HIV positive. My son would later ask me what his dad meant by that and I had to tell him. I had been struggling with the thought of telling them what was happening and that was not how I had hoped I would tell them.
Why did you decide to become a peer educator?
Celestine: Well, I went through a lot in my early years with this infection: emotionally, physically, mentally, my whole life was changed by all of this. My friends looked at me differently; the society (then) did not accept me. My husband has never gotten around to accepting me. I still get stigmatization in my own home from my husband. I had two kids, and all of the sudden life had to be different. I gained strength from close friends and from getting the right information on how to deal with the infection; I am sure that these are the reasons that I am here. So I thought of my peers, those who are younger than me or even older. I thought about the type of hardships they are going through and how myths and beliefs and misconceptions have contributed to their stigmatization. And I decided I had a story to share and people to reach out to. The problems I went through…I would not wish them on anyone, and I wanted to be a source of information and solace.
Do you think your HIV status affects your work as a peer educator either positively or negatively? If so how?
Celestine: Definitely positively. People need to see and hear things they can relate to, and by sharing my story, I empower the youths with information from a real case scenario of how a person lives with HIV and AIDS. By being positive myself and speaking freely with them, I am always sure that I will have their full attention.
What are your greatest peer education successes?
Celestine: Since I publicly shared my status, more youths have had the courage to get tested. Some who test positive know better how to deal with their current situation. That has been a source of strength for me—knowing that revealing my status has brought about positive change among the youths and my peers.
What have you learned from the young people you work with? What do they see as their biggest challenges?
Celestine: The youths who I work with have accepted my status and they have acknowledged that status does not define a person…that it’s how you live and what you do that define you. But the biggest challenge is that not all of them want to disclose their status or even talk about it; this makes it hard to form a youth support group for those living with HIV.