Story by Lucy Maroncha (Herself)

I am a 43 year old print journalist living with HIV for the last six years. When I was growing up in a small village in Chogoria, in the eastern Province of Kenya, my mother used to caution us to cover our mouths whenever we neared Chogoria’s Hospitals T.B isolated rooms like they used to be called then. “T.B is airborne and deadly,” were her calculated words. No one in our family or in the community therefore had the wildest guess that they would watch me wear away into a skeleton with my five months wrestle with T.B and HIV. The reality hit everyone like a thunder bolt. What we feared most had happened to us!

“Lucy, apart from being HIV+, you have acute pneumonia and severe T.B, In fact three quarters of your lungs have completely been destroyed!” was the harsh verdict from the doctor without preamble or the slightest sign of remorse. I helplessly looked at the X-ray which carried the devastating message. I was too ill to understand what was worse than the other: HIV or T.B? This was 6^th June 2006.

I had for several months complained of a heavy chest, difficult in breathing and fatigue. I had visited many hospitals and private clinics but all of them dismissed my pains with some antibiotics or suggested that I take a rest. I bought their suggestions easily because as a journalist within the community, my work involved a lot of walking and running about. I would therefore take a break but a week later; the chest would start aching again! I knew something was amiss but did not the least think of T.B.

Never would I have imagined that I had a T.B infection. After many tests and X-rays all showing (or the doctors saying) that I was okay, I resorted to painkillers. It was several months later that the first symptoms showed. I started wearing out which I attributed to my lack of appetite. I reduced to 35kgs and had difficulties walking. I had never been interested in health reporting so I had no idea what symptoms were common in T.B. I started oversleeping and soon I could spend even two days in bed!

The last symptoms occurred with heavy coughing and night sweats, when I was already full blown with HIV and T.B. That is when I went to a specialist who broke the news of my HIV+ status and the T.B condition. He advised I get admitted to hospital immediately. That marked the genesis of my five months wrestle with T.B in Maua Methodist hospital in the Eastern province of Kenya. I had little knowledge of what had kept the infection hidden in my lungs for more than eight months or where I had contracted it. But that was now irrelevant. The fact was that it had been diagnosed and I had to deal with it.

Now a T.B advocate

When I later won the battle which I had almost lost at some point, and was on my feet again, I drew battle lines afresh with the deadly disease. I realized that many people die out of ignorance so I decided that the first battle was to fight T.B -related ignorance from the community. I read anything that could offer any information on T.B and consulted medical practitioners for any jargon. I would then deliver the message in my own simple words to the community.  With my journalism and communication skills I embarked on advocacy. I started writing my own story to different media houses and encouraging people to learn the symptoms of T.B so that they do not identify it too late like I did.

This worked very well for me and by January 2009, I started editing the Kenya Network of Women with AIDS (KENWA) magazine called Give me a chance. I later joined Women fighting AIDS in Kenya (Wofak) and later HOPE worldwide Kenya (HWWK) where I am currently working as a Communications Assistant. I advocate for T.B  as an opportunistic infection within HWWK's programs that relate to HIV.These have been very good platforms for me to interview those who have gone through traumatizing T.B experiences and turning them to success stories. I look far and wide for network of people who have had T.B. Surprisingly I started my advocacy campaigns while on my eight month T.B treatment! I did not even see how the months flew!

I can cross any river to assist any person who has symptoms that represent T.B. When a Network of journalist living with HIV was started in Kenya, I grabbed the chance with pleasure. I realized that journalists do not talk about themselves; their stories go like this: he/She said…according to… speaking at……but do not tell the story about themselves. So in 2008 we formed the network and started telling our own stories. I personally embraced the T.B story and have retold it over and over in different words and different media lines.

The message is that people need to be educated on the symptoms of T.B and on the medication adherence. This will also arrest the stigma related to T.B. which is worse than the HIV-related stigma. With the HIV stigma, people at least do not fear sitting next to you, but with T.B, shaking hands with people needs a lot of favour. This calls for serious campaigns and advocacy which I am still working on to accomplish.

Ignorance has worse effects than the sickness. Had I not overlooked the symptoms though, of course out of ignorance, I would have saved the situation of being bedridden for five months. My effort and wish is to have people educated and death and stigma reduced. This calls for more work for us T.B advocates.

What may be remedial as we transform the fight against T.B to elimination is more intensified education. Let us no longer have threats and stigmatizing pictures so that we can encourage people to test before it is too late.