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 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.

Back then, in 2009, her CD4 count was only seven. She was very sick and had some skin infection that made her look and smell [...]]]> If you had seen Rukiya when I met her, at age 2, you would not have thought that today she would be alive and well and at school, age 7. 

Back then, in 2009, her CD4 count was only seven. She was very sick and had some skin infection that made her look and smell bad.

Her mother had lost hope for Rukiya and brought her to our association. Although I am neither a doctor nor a nurse, I could help the mother emotionally. I kept telling her to love her child despite her ill health.

Doctors put Rukiya immediately on antiretrovirals. She recovered and has been taking her daily pills conscientiously ever since, along with her mother. When she is at school, the matron reminds her to take the pills.

Drawing by Delfina.

So hard to talk about HIV

Rukiya’s story tells us a lot about couples and HIV.

The mom cleans a church pit latrine and the dad is a bricklayer. The mom says she found out she was HIV positive during antenatal care.  But she did not believe the diagnosis; she was faithful to her husband and thought he was too.

Or maybe she believed it but did not dare speak. So she kept quiet about her status.

It could be that the husband knew or suspected he was HIV positive and he too kept quiet.

I totally understand why it was hard for Rukiya’s mother to accept her initial diagnosis or talk to her husband about it.

Women are usually the first ones in a couple to learn they are HIV positive, at antenatal care.

It is really hard for you, as a woman, to talk to your partner about your HIV status, and have him understand you, not blame you.

So a woman will hide her status, and this brings many problems. For example:

• Reinfection if your partner is HIV positive.
• Self stigma and denial – always blaming yourself.
• Violence, especially when a man finds out later from someone else.
• Mistrust in families, spouses blaming each other about who brought the virus into the family.

Rukiya was delivered healthily, but at age two she fell sick. At hospital, the child and her parents were tested. All were HIV positive and started antiretroviral therapy. I have stayed close to them, so close that Rukiya calls me Mummy.

The parents went on to have three more children, now aged four, two, and ten months, all born HIV negative thanks to ARVs.

I tell Rukiya that I am also HIV positive and I have a family, a job and a career helping other people with HIV, and that she, too, will have a rich and happy life. And she gives me a big tooth-gapped smile and hugs me.

I am so privileged to have in my life this child, who is not from my womb, but who calls me Mummy Jackie although I am not her real mother.

Jacquelyne Alesi is a wife, mother, daughter, HIV activist and Programme Director at the Uganda Network of Young People Living with HIV/AIDS, an organization that since 2003 works to improve the quality of life for HIV-positive youth in Uganda.

I was 17 years old and living in Wakiso district, 20 kms north of Kampala. My boyfriend was 24 and he was everything to me, but I was so [...]]]> I don’t want to dwell on my past because I am firmly looking into the future, but let me tell you a little about my life.

I was 17 years old and living in Wakiso district, 20 kms north of Kampala. My boyfriend was 24 and he was everything to me, but I was so wrong. With him, I got a triple whammy, three things that were very hard to live with: I lost my virginity, became pregnant and contracted HIV. That’s why I don’t like to talk about the past, because it makes me cry. My baby son died on June 3, 2005, when he was eight months old because I did not know that we were both HIV-positive.

The author, Jacquelyne Alesi, on her wedding day.

After his death, I was sick on and off. At school, I could not concentrate in class, thinking about my baby boy. I felt out of place with my fellow students. The baby’s father had dropped me when I was pregnant, and died not long afterwards.

What kept me strong were my lovely parents, who encouraged me to cry out my pain, to overcome the problems and to study hard so I could have a brighter future.

One year after my son’s death, my parents suggested an HIV test. I agreed. I thought I was OK. I got a shock. I cried. I kept reading the results and asking the counselor if those were really mine.

I was devastated. I crossed the road without looking and somehow got home, I don’t know how. My parents realized I had tested POSITIVE because I was running like crazy. The first thing my dad said was, “Don’t worry, we are here for you no matter what”.

That is what I needed to hear after my long journey of trauma.

I finished my advanced level and went to university, not without struggles, challenges and disappointments – like friends who disclosed my status without my consent.

Love knocks at my door

In 2008, I met the man I was waiting for. I was tired of being single. I needed someone to share joy and sadness. And there he was: two years older than me and studying for a degree in information technology.

We dated for over one year without having sex. I had promised myself to tell my HIV status to the love of my life before becoming intimate. When I told him, he was in denial. He couldn’t believe it. He said I was inventing it to drop him.

We went for a test together: he was HIV negative and I was HIV positive. He said the machines were lying. We took another test: same results.

He disappeared for three months.

One day he left a message on my phone: “Hello, my love, can we meet this evening?”

I feared he would say this was the end, or perhaps beat me up because I broke his heart, so I took a friend along. He said: “What I have to say is between me and you”. I told my friend to wait aside.

He said: “Am sorry, my love.  I want you to be my wife, will you marry me?”

That was last thing I expected!

In 2009 we got engaged and I started ARV treatment. Alpha, my eldest son, was born HIV-negative that year.

On September 17, 2012, we were married in church in Kampala. That was a very wonderful day for us and our families. Alpha is now four years old, John is 18 months old, and we look after four HIV-positive orphan children.

I am 28 years old, openly living with HIV in Uganda, in a loving discordant relationship, with access to lifesaving ARV treatment, able to give birth to two wonderful children who are both HIV-negative as a result of prevention of mother-to-child transmission services.

However much I don’t like my past, it has helped me build a better future.

Unfortunately, not everyone has been as lucky as me in accessing treatment, because of stigma and discrimination, coercion and violation of their rights. As an activist, I help young people accept their HIV status. This is my dream: that every person living with HIV in Africa may have what I have – ARV treatment, health and love.

Jacquelyne Alesi is a wife, mother, daughter, HIV activist and Programme Director at the Uganda Network of Young People Living with HIV/AIDS, an organization that since 2003 works to improve the quality of life for HIV-positive youth in Uganda. 

I was very pregnant and very happy. I lived in Rome, Italy, and I wanted a home birth.

I wanted music, soft light, friends, baby on my [...]]]>

Safe motherhood for all. By F. Beaumont.

My daughter Esmeralda turns 18 today. Like all parents, I am amazed at how time flies. Like all mothers, I get reminiscent about those days, 18 years ago.

I was very pregnant and very happy. I lived in Rome, Italy, and I wanted a home birth.

I wanted music, soft light, friends, baby on my stomach still attached by umbilical cord, no drugs, and no epidural. A birth by my own rules, not by a cold hospital’s.

I found a group specialized in home births – Il Melograno. Their package included ob-gyn and midwife, courses, support and, more importantly, a woman-friendly feel. A photographer from Marie Claire magazine would do a photo reportage on my happy home birth.

Our premise: pregnancy is neither a disease nor a disability. Pregnancy and birth have become over-medicalized; women should reclaim it from doctors overly fond of control and caesareans. My family, my colleagues and the baby’s father thought I was crazy. Home births are more common now but women still battle to extricate pregnancy and birth out of the hospital realm.

In Brazil, we recently lost a battle for a  centre for natural birth in Rio de Janeiro.

Clueless mommy

In my case, at midnight, after 30 hours of labour, I was stuck at 6 cms dilatation – and exhausted. A home birth must be 100 percent natural, so the few drops of oxitocyn to trigger full dilation had to be administered in hospital, three blocks away. There I went. At 2am my daughter was born – and promptly taken away to the nursery.

At 5:30am a nurse literally dumped my baby girl in my arms and left. No instructions on how to feed, nothing. My midwife and friends were coming at 8 am. What to do?  I had never been around a newborn. I was like Carrie Bradshaw in Season 2 of Sex and The City – domesticity and motherhood were not part of my landscape.

So there I was, baby on one hand, baby book on the other, trying to figure it out. This is the most ridiculous and pathetic image of modern motherhood, I thought. How did we end here, from birth as a group event to 6 AM loneliness in hospital?

Less than 24 hours later, against hospital rules, I signed waivers absolving doctors of any responsibility and checked myself out.

I went home and turned on the CD player. My daughter’s godmother had been listening to the Rolling Stones: “You can’t always get what you want”. I chuckled.

Two close friends, one in Windhoek and one in London, recently tried a home birth but ended in hospital, just like me. Still, we were happy to go through labour at home.

Meanwhile, many women struggle to have a safe birth – anywhere. About half a million women die in childbirth very year. There are not enough trained midwives to ensure a safe labour, whether at home or at a clinic,

Art by Nelly Romeo Alves, photo by E. Zimbres

from Mexico to Uganda.

At a conference on reproductive health in Berlin last week, the World Health Organisation reported that one woman dies every minute for lack of adequate pregnancy and birth services.

A cruel paradox: the world proffers to revere motherhood but does not make it safe and comfortable for mothers to give birth.