Living with HIV Is No Picnic

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 am living positively with HIV. But, in the flurry of speeches and interviews, of extolling antiretroviral treatment and 'normalizing' the disease, it makes me sad to see that people, instead of seeing HIV as a dangerous reality, see it as no more than a fever.

Sometimes after a talk, many 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 live recklessly, 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 deadly 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, have been, it does not mean we don't go through challenges living with HIV. 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 pills every day at the fixed time, on the street or in the shopping mall. But I feel sad for those who swallow 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 lipodystrophy). Some appear burnt as if scalded by hot water, and some people have horrible nightmares or liver problems. Who wants to join our club?

And every day we wonder whether the drugs will work for our body type and for how long, or whether we will be among the 30 percent who develop resistance to ARVs, and we only have three pill regimens in Uganda, so every failure courts disaster.

I hear young girls say they would rather get HIV than get pregnant. That is sad indeed, to be more scared of pregnancy than of HIV. We need to rethink the ABC strategy (abstain-be faithful-condomise) because with a million campaigns about family planning services, girls think they no longer need condoms. Family planning protects us from unwanted pregnancy, they say. And what protects us 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. 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.

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Thanks for the great article

Lovinglife101's picture

Thank you for your insightful article.  I understand your frustrations, as I hear similar things.  Living with HIV is possible, but as you say, there are many obstacles and challending allong the way.  I wish you the best of luck and hope to hear more from you.

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Red40something commented on 9 By 49

Wed, 9/15/2021 - 1:51am

Red40something's picture

Red40something commented on 9 By 49

Wed, 9/15/2021 - 1:50am

Get basic information about a variety of approaches to treating the metabolic changes that may result from living with HIV or taking HIV drugs.

Lipodystrophy means abnormal fat changes. This article addresses treatments for fat loss, or lipoatrophy.

Get basic information about lipodystrophy: body shape changes, metabolic complications, and causes and treatment of fat loss and fat gain.

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