Inviolata Mwali Mmbwavi has been living with HIV for the last 23 years. Hers is a story of resilience as she battled the stigma that comes with the disease to soldier on. Inviolata narrates to HENRY KAHARA what it’s really like to live with HIV.
Dear good people, as a two times aspirant, my personal life and HIV/AIDS activism (my history) is becoming very difficult to be delinked from me this campaign season…”
Above is a post Inviolata Mwali Mmbwavi put on her Facebook page four years ago when she unsuccessfully vied for the Lurambi parliamentary seat. According to Inviolata, the people concentrated on money and her HIV status instead of the vision she had for them. The two saw her lose the seat she was so determined to clinch with an aim of helping them.
I first meet Inviolata in her office along Ngong Road where she works as a coordinator with the International Community of Women Living with HIV/AIDS, Kenyan Chapter (ICWK).
Inviolata is smart, energetic and jovial. She has been living with HIV for 23 years but it is very difficult to tell.
A bad dream
Her journey with the virus started in 1993, just after finishing her Kenya Certificate of Secondary Education (KCSE). She was lost in the world of freedom and she enjoyed life with abandon.
Her amusement was however short-lived for she fell pregnant. It would be during one of the antenatal visits that she came to learn of her HIV status. “I was shocked when the test came out positive.
I didn’t believe it and this prompted me to do another test, which confirmed that indeed I was HIV positive. I wished it was a bad dream from which I would eventually wake up; but no, I was positive,” she says.
During that time, stigma with regard to HIV/ AIDS was very high in the society and this made Inviolata keep the news to herself.
“In early 90’s, people were yet to fully understand what the virus was all about. There were terrible myths being peddled around and thus the stigma was high. Many people died from the repercussions of the stigma as they would withdraw from society and not take good care of themselves. In addition, antiretroviral drugs were not readily available and accessible in Kenya. It was chaotic to say the least,” recalls Inviolata.
Her new status aside, she had another problem to deal with, which she could not hide from the society.
The pregnancy. Again, this was a time when getting a child out of wedlock and furthermore while living with one’s parent was frowned upon. She risked being sidelined and being branded as a person with loose morals: but these were the least of her concerns.
“I clearly understood the repercussions of getting pregnant out of wedlock. But my biggest worry was how people would react if they came to know about my HIV status,” she explains.
Inviolata sought refuge at an aunt’s home in Nairobi, far away from her neighbours’ prying eyes. Her aunt had had a child out of wedlock and she therefore understood Inviolata’s predicament.
“I delivered safely and thereafter went back to my aunt’s house to recuperate and take care of my baby. Unfortunately, I fell ill. It was then that relatives suspected I was HIV positive. They informed my parents. My parents asked me to go home and within no time word went round the village that I was HIV positive,” she narrates.
Her family stood by her and took care of her. Her health improved drastically after several hospital visits. But she faced another challenge – finances.
“My father was polygamous and he had abandoned my mum who was his first wife. The burden was too heavy for my mum and I had no option but to seek employment so as to help her. I left my daughter under her care and relocated to Nairobi in search of green pastures,” expounds the third born in a family of 10 children.
The first thing Inviolata did when she arrived in Nairobi was to look for a way to manage her condition. She found an organisation that dealt with individuals living with the virus and it is here that she was connected to the Kenya Medical Research Institute (KEMRI) where she went for checkups on a regular basis and treatment whenever she felt unwell, which was free of charge. Inviolata notes that stigma was lower in Nairobi compared to upcountry.
“I was among a group of individuals living with the virus being used as specimen for research and that’s how I survived, as we got access to medicine” she says.
Showers of blessings
In 1998, Inviolata secured a job as a receptionist with the Association of People Living with HIV/AIDS. Here, she would get a lot of resource materials that touched on issues surrounding the disease.
She was particularly fond of a pull out – Straight Talk – in one of the dailies. The pull out, which was a product of a non-governmental organisation, carried stories of young people struggling with Sexually Transmitted Diseases (STDs) and unplanned pregnancies.
“I one day decided to write about my story and sent the letter to the magazine’s editor. Thereafter, they came looking for me with an offer to be trained as a peer counsellor. Lady luck seemed to be smiling upon me for I also got a scholarship from the Kenya Association of Professional Counsellors (KAPC) for a diploma in counselling,” recalls Inviolata.
Inviolata had not yet come out in the open about her HIV status but in order to carry her mandate as a peer counsellor efficiently, she had to come clean. Doing so also gave her peace of mind and moral authority to speak about HIV.
“I was the only person who was positive among my colleagues at KAPC but they didn’t treat me differently after they came to learn of my status. I wish the world treated those living with the virus the same way because there is still stigma in the society,” she notes.
It is said when it rains it pours: that same year, Inviolata was selected as a beneficiary of an exchange programme that took her to the United States of America. After the visit to USA, she worked with different NGOs and the government sensitising people on HIV.
Her activism saw her sharing her story before parliamentarians in 1999 in Mombasa where HIV/AIDS was declared a National Disaster. Her act of coming out was groundbreaking and it began to turn the tide against HIV stigma in the country.
Her national campaign on sensitising the public about HIV and AIDS exposed Inviolata to the political world. She was drawn into the political circles, which made her dive head on into politics.
In 2007, she unsuccessfully contested for the Embakasi parliamentary seat. Thereafter, she underwent a six-month leadership training in Canada so as to equip herself with leadership skills. In 2013, she unsuccessfully vied for the Lurambi parliamentary seat.
“I came to learn later that my status was one of the reasons why I failed to secure the seat as my opponents used it to fight me,” she says adding that Kenyan politics is gender and money oriented at the local level.
Failure to clinch the seat really affected her and she went into depression, which affected her health. In 2014, she was put under antiretroviral drugs to boost her health.
Her secret to living a positive life?
“I do a lot of self-care. I eat, dress and rest well. I don’t care what people say about me and the few friends I have are people who lift me up and inspire me,” says Inviolata.
She calls upon HIV/AIDS survivors to live responsibly since it is the only way to live long and enjoy life. Inviolata admits that HIV can be a setback as it stops a person from paying attention to important things in life to concentrate on their health. She encourages those infected not to let the virus hinder them from living life to the fullest.
On the strides the government has made in combating the virus she says, “The government is on the right path to fight HIV/ AIDS but much needs to be done. However, most of the HIV/AIDS funds come from donors. What will happen when the donors leave?”
So, what does she do during her spare time? “When I am at my rural home, I enjoy farming. I also like spending time with my daughter who graduated from the University last year,” she concludes.