How I battled HIV stigma

In our silence of old

I saw the stigma that came with contracting HIV and met many people some of whom were my friends deserted by family and fair-weather friends to die in isolated or lonely hospices, taking that last gasp until they could hold on no more.

For many, they already faced the prejudice and discrimination for their sexuality, just as laws were being enacted for equal opportunities that stated the letter and for which there was no spirit to adhere to them. I had friends who were kicked out of their homes, sacked from jobs, banished from close-knit societies, and excommunicated from religious communities, disinherited, and shunned as if they were dead to the living. It was tough.

Then in the homosexual community, there is another kind of ostracism, the divide between those who were living like there was no tomorrow and those for whom tomorrow gave no assurance that they would still be living. Visceral hatred and abandonment in our already traumatised community, it was rotten.

My tests and my counsel

I took many HIV tests for years but gave instructions that I did not want to know the results. My results probably went into a study and since the test was at the insistence of the health and social workers, it was like I had no skin in the game, my curiosity did not lean towards knowing as if I found a world of bliss out of my ignorance.

When I did eventually go all in to find out about my status, I already suspected I had contracted HIV, but could not tell for how long. I should have curated the people to tell and not many knew, besides my pastor and a few close friends. One unguarded slip to an acquaintance I once had to kick out of my home some years before, brought vituperation, nastiness, and abuse. I ignored him even if I pretended not to be affected by his onslaught.

Battles with ignorance and denial

I had to face the stigma in myself first before I could tackle it from the outside. I am entirely responsible for my condition regardless of the backstory that might have made me susceptible to the misuse and abuse of sex. Are you so loose? That was the question from the matriarch, 19 years after the fact.

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It was one thing to know what condition you had, but that is quite different from understanding how it might have a consequential impact on everything that pertains to you; you can conflate denial with false invincibility and by the time you know it, you are knocking in death’s door.

HIV coursed through my body for 7 years from when I got the test results until opportunistic infections came in what looked like a wave of infirmity starting with shingles, but I was quite so immunosuppressed, what looked like athlete’s foot towards the end of spring was Kaposi sarcoma, and AIDS-defining symptom that was also cancer.

Deflecting out of embarrassment

Cancer was easier to use as a cover for everything else. I knew, my doctors knew I had full-blown AIDS, anyone else was informed I had cancer and as the treatment for Kaposi sarcoma included chemotherapy, it was just as cancer and cancer should be, there was no need to talk about HIV or AIDS. I had to grow into becoming comfortable writing, discussing, or sharing about it.

I guess it got to a point where I understood that HIV could be treated as a chronic condition quite manageable with the right therapies. Those of us living with HIV coalesced and began to give our voice to be active and contributing members of our broader community banishing the old pictures of young men dying to memorials that we still revere. Those gone before are all part of the body of knowledge and truth that has given us better outcomes.

We began to address HIV stigma

The concept of ‘Clean’ became a byword for not being HIV+, liaisons would ask if you were clean and by extension suggesting you were dirty if you were HIV+. Yet, people who know they are HIV+ probably test more frequently, are under medical supervision, and when on ARVs would most likely have an undetectable viral load. The frequency of testing also means they detect sexually transmitted infections earlier before the situation becomes chronic and get effective treatments and cures.

Blog - Dealing with sexuality and HIV stigma

Whenever anyone asks whether I am clean, I say, “Clean is when you have had a shower.” It should not refer even remotely to sexual health.

When medical science determined having an undetectable HIV viral load meant there was minimal risk of transmitting the virus, we saw the advent of the U=U (Undetectable Equals Untransmittable)

Blog - Normalising HIV Challenge against stigma

What I could have lost

My journey from talking about cancer alone to talking openly about being HIV+ with an undetectable viral load was one of development and growing self-confidence along with the desire to live my own life boldly without fear, shame, or embarrassment.

The deeper story of how my cancer was as a result of full-blown AIDS belies the fact that I had foolishly not addressed the issue early enough, hoping that some miracle and sudden change of fortunes would take everything away. I was in presumptuous denial of an existential threat to my life.

Blog - When I had the murderous cancer of denial

A miracle cure would not have served me well, and though I would have had a testimony of the power of God, I would have been excused from the human experience of knowing adversity and coming through it with my own story of life and gratitude.

This is who I am

Not that I wish adversity on anyone as a form of teaching lessons in life, but when one is met by misfortune and the acceptance of the reality of things we can control and the other things completely outside our control, we can face what is ahead of us and if good fortune brings us out to the restoration of wellness, verve, and vigour, we might find new meaning to the story of life.

I am HIV Positive, it did lead to full-blown AIDS, I had competent medical intervention that rolled back the grip of death, sent my HIV viral load to undetectable, gave me healthy prospects in life and the opportunity to find a new purpose in the joy of living. I will not be ashamed of those facts and the stigma of a projection of those whose ignorance I can help no further by allowing them to define me.

I saw this on a dating profile, years ago, “In a perfect world, the positive would be open and the negative would be open-minded.”

The Stigma Project