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IPS Writers in the Blogosphere » Barbara Kemigisa http://www.ips.org/blog/ips Turning the World Downside Up Tue, 26 May 2020 22:12:16 +0000 en-US hourly 1 http://wordpress.org/?v=3.5.1 To live and love with HIV – is it possible? http://www.ips.org/blog/ips/to-live-and-love-with-hiv-is-it-possible/ http://www.ips.org/blog/ips/to-live-and-love-with-hiv-is-it-possible/#comments Tue, 16 Dec 2014 20:01:10 +0000 Barbara Kemigisa http://www.ips.org/blog/ips/?p=19614 A few months ago I fell in love with this guy, and he fell in love with me. I told him that I have HIV. I showed him my antiretroviral pills (ARVs) and explained how treatment works. I wanted to make sure he knows what he is getting himself into – a relationship with an [...]]]> A few months ago I fell in love with this guy, and he fell in love with me. I told him that I have HIV. I showed him my antiretroviral pills (ARVs) and explained how treatment works. I wanted to make sure he knows what he is getting himself into – a relationship with an HIV positive woman.

Despite my serious effort to warn this dude, he said he loved me. He said he was ready; that he will trust God for whatever may happen.

So we have a wedding date! He proposed last week!

Our blogger is concerned that new legislation in Uganda will make life for those with HIV more difficult. Credit: Amy Quinn/WikiCommons

Our blogger worries that a new law in Uganda will make life, love and marriage more difficult for those with HIV. Credit: Amy Quinn/WikiCommons

Like every girl in reciprocated love, I am having a full blast of it: to have someone who cares, who looks after you, who tells you the sweet words that make you feel the one and only and best creation on earth ….. You know the feelings, how love and companionship sweeten our lives.

HIV demands some planning

Last week we registered at my clinic in Kampala, Uganda’s capital, as a discordant couple. This means one person is HIV positive and one is HIV negative.

This is important because he will get counseling, routine check-ups, and perhaps Pre Exposure Prophylaxis when we want to have babies.

An HIV positive person who follows ARV treatment consistently becomes non-infectious. Viral load becomes undetectable. So I must take my ARVs without fail every day to sustain a discordant relationship. You bet I do!

My boyfriend, who turned 28 this week (I will be 29 in January), and who lives in the same neighbourhood (this is how we met), told his family that he is marrying an HIV positive woman. Some family members objected, but he was strong, and we are planning our wedding and to live happily ever after.

For many girls living with HIV, even finding a fellow HIV positive man to date is hard. Women may suffer from self stigma and low self-esteem; they may fear disclosing their HIV status to a possible partner. Or they disclose, and the men fail them, they run away.

Another kind of failure

This year, our government failed us big time. It passed the anti HIV/AIDS bill, which has some really bad clauses for those of us living with HIV.

Concentrating on Clause 4: a person who knowingly transmits HIV to another shall on conviction be liable to a fine of up to US$ 1,900 (a fortune in Uganda) or imprisonment for up to ten years, or both.

Clause 4 means well in trying to penalize intentional infections. However, not everyone who infects someone intended to do so. My baby girl was infected during breastfeeding. I did not do that on purpose. I was too poor to afford baby formula. Does that make me a criminal?

How can you prove intention to infect? Or who was infected first? This law lends itself to malicious use, to manipulation and blackmail. It can be used by angry husbands and relatives to disposes wives and widows of land, home and children.

Clause 4 brings insecurity. It deepens stigma and mistrust and may lead to risky behavior. Women are not going to start telling guys they are dating that they have HIV. They may choose one night stands and multiple partners to avoid being identified, blamed and charged.

To me, the bill is saying that positive people must only marry positive people. Is it the role of the state to control love?

What is wrong with our lawmakers that they approve a law that makes us wary and ashamed of our condition, that does not help us embrace life with a healthy attitude?

I hear young people say they would rather not know their HIV status, instead of knowing and running the risk of being criminalized later.

Sadly, I have to conclude that our leaders are ignorant. As a nation, we have a lot of sensitization to do for both our communities and leaders.

In the meantime, wedding bells are ringing for us. We are blessed; we are lucky. But with this new Bill, many people living with HIV will despair of ever finding love and building a family.

facebook_-284426751Barbara 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.

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Turning my life around: from self-harm to self-respect http://www.ips.org/blog/ips/turning-my-life-around-from-self-harm-to-self-respect/ http://www.ips.org/blog/ips/turning-my-life-around-from-self-harm-to-self-respect/#comments Mon, 17 Nov 2014 17:01:33 +0000 Barbara Kemigisa http://www.ips.org/blog/ips/?p=19396 There was a time when I hated my roots and my life and I wished it would change. I blamed someone or something until I realized that, well, it is me who needs to change. And as hard as it was, I did change, for the better, and I want to tell you about it.

[...]]]>
There was a time when I hated my roots and my life and I wished it would change. I blamed someone or something until I realized that, well, it is me who needs to change. And as hard as it was, I did change, for the better, and I want to tell you about it.

Life has thrown me so many stones that I thought I would collapse under the heap.

In my early teens, I was uncontrollable. The boys and men I had sex with never stayed. The alcohol disappeared and I would sink deeper in despair. I didn’t bother about who touched me where – I was a girl for public use.

Before you judge me, listen to my story. I am one of so many girls acting in a self-harming way because of a horrible beginning in life.

From the age of six, I was sexually abused by young uncles. Incest did not exist in my world in Kabarole, in rural Uganda, and later in Kampala, the capital. Sex was a way of life, not a way of giving pleasure, love and respect.

When I reached puberty, I just went on having sex with anyone. I did not think of unwanted pregnancies, sexually transmitted diseases and HIV. I didn’t know about these things.

Worse, I shut my ears to the few health education programs available in the early 2000s.

I got pregnant at age 15. I didn’t have a clue that a baby was growing inside of me. Someone who noticed told my family. Protecting the family name, they took me to hospital and the pregnancy was terminated.

Word got around in my boarding school. Nobody talked to me. My friends abandoned me. School became hell. To be expelled, I burnt my mattress.

Out of school, I was wild and reckless. In 2008, I got pregnant again. My boyfriend left me the moment I told him I was pregnant and had tested HIV-positive during the first antenatal care visit.

I was put on antiretrovirals (ARVs) and my beautiful baby girl was born HIV negative. But I didn’t follow the instructions of exclusive breastfeeding for six

months. I had little milk and no money for food for her or for me. She acquired HIV, nearly died and started ARVs when she was eight months old.

I am happy to say she is now a healthy, bouncy five years old.

Adolescence is a turbulent time and young people need guidance to navigate it safely, says our blogger, herself a survivor of teen turmoil, who now counsels youth about HIV and unwanted pregnancies.

Adolescence is a turbulent time and young people need guidance to navigate it safely, says our blogger, herself a survivor of teen turmoil, who now counsels youth about HIV and unwanted pregnancies.

Turn around

This was the turning point in my life. I wanted to, I needed to live differently.

I looked around and saw so many young people getting infected, feeling miserable and dying. AIDS is the biggest killer of teenagers in Africa today.

I thought: who knows how many have gone through a hard childhood like me? I can use my experience to warn young people about AIDS and unwanted pregnancy. And for those who already live with HIV, I can help them live positively.

I can give the one thing I never had: someone to talk to, someone to guide me. A red light telling me to stop.

I have seen the impact my story has on young people every time I share it. Young people can relate to me, to my hard life. And I can relate to their daily doubts and struggles.

Sometimes I see my uncles. I have not confronted them. I have forgiven them; I can’t dwell too much on the past. I have to let go or I won’t be able to move on with life.

I believe that everything happens for a reason. My painful past was an on-the-job training so today I can help young people live healthily and safely in the times of HIV.

facebook_-284426751Barbara 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.

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Let’s get Real: Being HIV-positive and on ARVs is no Picnic http://www.ips.org/blog/ips/lets-get-real-being-hiv-positive-and-on-arvs-is-no-picnic/ http://www.ips.org/blog/ips/lets-get-real-being-hiv-positive-and-on-arvs-is-no-picnic/#comments Mon, 18 Aug 2014 10:49:15 +0000 Barbara Kemigisa http://www.ips.org/blog/ips/?p=18486 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 [...]]]> 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

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 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.

 

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