It’s time to say it: in one area, we, HIV/AIDS activists, have caused more harm than good.

I am proud to be one of the few Ugandans to say publicly that I live positively with HIV.

But, in the flurry of speeches and interviews, of extolling antiretroviral treatment and ‘normalizing’ the disease, it worries me to see that people, instead of seeing HIV as a danger, see it as no more than a fever.

No more sugarcoating the virus: taking ARVs for the rest of your life is no picnic , says HIV positive activist Barbara Kemigisa

Sometimes, after a talk, people tell me: “You make me feel like I can get HIV and live with it.”

Well, yes, I live with HIV, but I would rather not. And so would you.

I am not going to sugarcoat the virus any longer, because I don’t want you to get comfortable and be reckless, risking HIV infection.

Reality check

It is high time we change our tune and our messaging and put HIV back in its place as a scary disease- because it is deadly and we ought to keep away from it as much as we can.

Irrespective of how inspiring we, HIV activists, may be, it does not mean we don’t go through challenges living with the virus.

Those daily tablets suck! It sucks even more knowing there is no stopping time! ARVs are for life. Until death do us apart.

Lucky us who have the courage to swallow the antiretroviral (ARVs) pills every day at the fixed time, on the street or in the shopping mall. But I feel sad for those who take the pills in the toilet because they can’t risk anyone finding out their secret.

Let’s look at the side effects of ARVs.  Some bodies get deformed and bloated (by lipodistrophy) and some appear burnt as if scalded by hot water (reaction to Nevirapine). Some people have horrible nightmares or liver damage. Who wants to join our club?

And every day we wonder whether the drugs will work for us, whether we will be among the 30 percent who develop resistance to ARVs. We only have three pill regimens in Uganda, so every drug failure courts disaster.

Wake up!

I hear young women say they would rather get HIV than get pregnant. It’s sad that pregnancy is scarier than HIV.

We need to rethink the ABC strategy (abstain-be faithful-condomize) because,  with a million campaigns about family planning services, girls think they no longer need condoms . Contraception protects us from unwanted pregnancy, they say. And what protects from HIV?

It is not surprising that Uganda accounts for the third largest number of new HIV infections in the world, after South Africa and Nigeria, and our prevalence is rising again.

Why are many of us silent and yet we know what’s killing us? Wake up! How do we get to zero new infections? By loving life and living without taking unnecessary risks.

Living with HIV is survival for the fittest. If you board this train, we will welcome you and help you. But it is best not to get on board. Stay HIV-free. It’s worth it. We only have one life.

Yours proudly living with HIV,

Barbara Kemigisa

Barbara Kemigisa is an HIV/family planning campaigner who lives positively with HIV in Uganda. When she is not campaigning, she dabbles in fashion design, plays guitar, composes and sings R&B songs about living with HIV with the same passion she puts in her work towards zero new infections.