Why I Advocate For People Living With HIV/AIDS

Not that it is anyone’s business, but last that I checked, I am not living with HIV/AIDS. None of my (current or former) partners have(/had) HIV/AIDS. Nobody in my immediate family is living with HIV/AIDS. This is not personal for me. This is not about me.

Advocacy always begins somewhere – at least that is how I see it. There is always a story – a human connection; personal, or not.

For me, advocacy for people living with HIV/AIDS begun in Kigali, Rwanda. Did you know Kigali is pronounced as Chigali? I was amused to find out on my trip there in 2018. But I digress.

It was November of 2018, and I had just published my first book. I was attending the International Conference on Family Planning, and I wanted to carry some copies of my book to sell and distribute there. I knew the travel weight limit would not let me carry all the books on board, so I asked the other Malawians who were going to help me carrying some of the books to Rwanda. They were delighted to help.

The night after we arrived, one of them asked me if we could grab dinner together. We went by a restaurant near our apartments; and we started chatting our way into the evening.

We talked mostly about our work. They told me that they works with young people living with HIV. This was my second time being close to someone who worked closely with people living with HIV/AIDS. The first was my ex-boyfriend; who happens to be an HIV specialist (doctor).

They told me of how fulfilling their work was, and somehow slipped into the conversation that they too were on ARVs. It took me a moment to even pick up what had just happened – someone, a near stranger who I was not dating, had chosen to trust me with their HIV status. I did not know how to react in the moment, but that single act changed a lot in me.

I came back home, and we became friends. They told me that they were born with the virus, and introduced me to the community of young people living with HIV that they worked with. I was very curious, and interested in their stories – not that they were pleasant stories. I’d like to believe I have been an HIV ally since then.

Everytime I saw someone write something which I know they would deem insensitive regards HIV/AIDS, I would react. I always reacted. They were my friends, and it was becoming personal for me.

Months down the line, I guess after reacting on social media a few time, a close friend of mine decided to trust me with their HIV status too. They too were with the virus. You would think I’d have gotten better at this, but even now, I did not know what to say. All I did, as I always do, was listen.

I have no idea what it is like living with HIV/AIDS. Even with as many stories as I have been entrusted with, I cannot stand here today and lie to you that I understand. I may never understand.

We cannot even begin to pretend here that there is no shame/stigma associated with living with HIV. That is not the society we have created. We are a violent people who know no limits when we want to harrass others, or uphold our self-righteousness.

I know that I have tried on several occassions to persuade my friend to come out about their HIV/AIDS status; but I know full well that maybe that could bring more harm that good to them. I however managed to introduce them to this community of young people living with HIV/AIDS, and they were glad because prior to then, they did not know the community even existed.

I cannot even begin to imagine the weight of carrying a secret about your health for life; simply to protect yourself from harrassment, shame, and sometimes abuse. See I can tell you about my HIV status and the HIV status of the people around me, because our status is negative. That is my privilege. Not everyone has that privilege. Even though we are working towards destigmatising HIV, society has not yet awarded everyone that privilege. People still get stigmatised and shamed for living with HIV/AIDS.

I remember when I was dating an ex-boyfriend of mine (the HIV specialist), and people, in a way to threaten me, told me that he was HIV positive. I was in college at the time, and I started to wonder if he had lied to me – if he had maybe even faked his diagnosis. I remember spending a few years living in fear of being HIV Positive. I remember being tested while with my current partner, and being scared to death of testing positive. I remember how relieved I was to know we were both negative.

You may ask why I was relieved – me, an individual who has done her research and understands that being diagnosed with HIV/AIDS is no longer a death sentence. Me who understands that if you are consistent with your ARV intake, the virus can become suppressed to the point of being undetected in your body. Me who knows that over 69% of people who test positive are now undetected.

I was relieved because I know of how the society we live in treats people living with HIV/AIDS. We share sentiments like ‘I am clean!’ when we get tested for the virus; implying that those who are living with the virus are unclean.

I have recently wondered why there is little to no shame associated with people who have gotten the Corona Virus. Is it that HIV is a sexually transmitted virus; and society find sex shameful; so anything sexually transmitted is shameful?

Do not even get me started on the misogyny that is paraded around women and the HIV virus in relation to wealthy (or unwealthy) men – that somehow the virus is the price you will pay for being associated with men or wealth. I call it projection – a case of the said men knowing that if they had even just a little access to money, they would be out in the world infecting young women with the virus irresponsibly.

And while I am making this point; stop infantilising women, calling women young girls, implying that they are children, and therefore not capable of discerning issues concerning their personal health; and that you must reprimand them on their life choices.

Do not mask your misogyny as a concern for women. If you have issues with women and wish to come off self-righteous, say that. Heck if you want to have at it with wealthier men/women dating younger men/women; do that. Do not project on anybody else. Your desperation to shame and infantilise women is not witty, it fools no one – it is embarrassing.

Try to think twice, about the implication of your words when you speak regards a community which spends their entire life shamed in every way or direction they take.

Indeed we must all protect ourselves from all diseases if we can, AIDS included; but let us be sensitive in the delivery of our words. Let us be careful to ensure we are not shaming those already living with the virus.

HIV status remains simply a health diagnosis. That is all it is. It is a health status. You are either negative or positive, and while I am aware that we are miles from destigmatising HIV/AIDS and other sexually transmitted diseases, I hope I can count on you to think twice, before sharing your next sentiment about HIV/AIDS.

It could be you, it could be me, it could be your family, it could be your friends, It doesn’t even need to be; for you to associate with other humans with decency, care, and without feeling the need to harrass them. Yes it is good to try and protect people from contracting the HIV virus; but is there any way to do that without directly(or indirectly) shaming those living with the virus? Can we pass the information without including our misogynistic agendas.

I love my work as a humanitarian; and if you think that I will take every opportunity to educate you about HIV/AIDS, you are absolutely right. I am a proud HIV ally. You should be too.

All my love,

Ntha