Reflecting on 20 years after an HIV-positive diagnosis

“In a perfect world, the positive would be open and the negative would be open-minded.” From a Grindr profile.

Preamble

Do not be afraid to take the test
Face up to the new reality
Avail yourself of all the help available
Do not be afraid to ask questions and seek clarification
If the medicine is not working for you, say so
It is always your body first before it is their guinea pig
It is your life, do not be ashamed of living it
Do not only survive but strive to thrive
Tell a story, your own amazing story

The day I knew

I write this today, not as a celebration, yet I am living witness to and a beneficiary of such amazing human ingenuity. Without certain advances in medicine and pharmacology, there would be nothing to celebrate.

Twenty years ago, on a cold Friday morning, I visited my local Genito-Urinary Medicine (GUM) clinic in Amsterdam, to receive confirmation that the blood test I had taken almost two weeks before had indeed tested positive for the Human Immunodeficiency Virus (HIV) and with that, alone to bear the news of my new circumstances, the 20 thof September 2002 became a date to remember.

The booklet I was given after my HIV diagnosis on 20/09/2002.

I cannot say for how long I had been infected with HIV, I had gone for a regular check-up since I was in an at-risk category and for the first time, I decided to take the HIV test, then resolved to receive and accept the result. For at other times including in the UK when I had gone for other sexual health screenings, I had either declined an HIV test or asked not to be informed of the result either way.

Medicine leads the situation

The said date comes with a medical result rather than an assumption or some premonition of my status, the science and the medicine with the essential expertise must always lead the determination and the management of any infection or disease.

Whatever the symptoms might be, until medical intervention has had its input, you do not have a diagnosis, it worries me that even as recent as 6 months ago, someone approached me to ask if his symptoms were indicative of being HIV positive just because I was also HIV positive.

I am not a doctor, there is no way I could confirm or give any reassurances, he had to go for the test and be ready to attend to the reality of the result and the further consequences of having that possibly life-changing information.

Those that went before

How I became HIV positive is beside the point, I subscribe to the AIDS Memorial Instagram page and picture after picture speaks of the lives of people touched and lost to HIV/AIDS, amazing, talented, beautiful, extraordinary people cut down in their youth, mostly at a time when there was nothing medicine could do for them.

We celebrate them with purpose and fondness, for What Is Remembered Lives, they were people like me and literally in the same age group, I met many who passed on in the 1990s. Their experiences and lessons learnt contributed to the body of knowledge that has defined what HIV medicine has become.

Then I consider the reasons why I allowed HIV to ravage my body for 7 years before I did anything about it.

Fear

Initially, I was afraid of the truth, for if I had taken the test earlier and the result was positive, what benefits and advantages in society would I lose and how would that knowledge impact many aspects of my life? That fear is real, and it comes from an understanding of how society easily ostracises things they do not understand. Strangely, I was not afraid of dying.

Blog — In Telling: Beware of pill rumours (2022)

Stigma

When I learnt that I was HIV positive, I had to be careful with who I shared the news. The first person I told was my pastor when I returned home. When I told a friend which whom I had sexual relations going back a few years, what I got was constant abuse and vituperation, it was vicious and unrelenting, I could not tell if it was he could no longer meet me as he used to because he never once did reveal to me if he had contracted HIV along with the likelihood that I might have contracted it from him. We move.

Knowledge of what HIV was then and even now is still poor, and this is also in the LGBTQ+ community, there are many advances in medicine and drug formulary that manages this virus, but you still hear or see people use clean and by inference, you are dirty if you are HIV positive.

Worse still were people ready to use that knowledge to blackmail or threaten with exposure and harass with the law, and I have seen my share of that.

Blog — Dealing with sexuality and HIV stigma (2017)

Blog — Experience is not enough to teach you to understand things (2020)

Blog — Normalising HIV Challenge against stigma (2020)

Denial

I suppose this was my greatest undoing for when I learnt that I was HIV+, I did nothing about it, the booklet I was given along with phone numbers of doctors to contact went onto my bookshelf as I quietly contemplated what my future might be.

When people told their stories of what drugs they used and the attendant side effects, the thought that I would need to regiment my life to such strictures, privations, and suffering, did not appeal to me, I desired a more leisurely life and sought the community of similarly affected people who did not discuss it, but indulged themselves.

Blog — When I had the murderous cancer of denial (2020)

Reckoning

At the time of my diagnosis, you were not immediately put on any therapeutic treatment, certain indicators had to be met to qualify, however, by 2008, my health had begun to deteriorate so much that I seemed to ignore or just not notice what was happening. These changes were observed by those who saw me from time to time, usually from one holiday to another.

On my left sole, a patch appeared that looked like Athlete’s Foot and I treated it as such, but all fungal treatments did not alleviate the problem, it became sore and painful that I walked about with a tightly bandaged foot, still full of fear of what it might be and in denial of what it really was.

I tried everything but the medical route to address the matter to no avail, as the pain became unbearable, I made an emergency call to my doctor, as I could no longer wait for a regular appointment.

At the first sight of my foot, she immediately said, “This is serious, I need to refer you.” She dressed the fungating tumours as she made the appointment to see a specialist, the result of which was a hospital admission 6 days later with full-blown AIDS and my foot being consumed by Kaposi’s sarcoma.

Living

Once the seriousness of my situation was determined, I was admitted to the hospital on the 22nd of September 2009 and began antiretroviral (ARV) treatment on the 30th of September 2009. My consultant gave me a reality check. “We can treat this,” he said, “but it depends on how you tolerate the treatment, if you do, you’ll be fine, else, you probably have 5 weeks.”

I took my first course of chemotherapy on the 5th of October 2009 and 6 subsequent courses to the 8th of February 2010. During this course, the cancer lesions had completely healed by December and the HIV viral load was undetectable, my CD4 count which was at a nadir of 20 struggled to rise beyond 200 for years, now it is over double that.

I have taken a more studious and responsible approach to my medical situation since 2009, being quite aware of new treatments, and changes that might be beneficial and seeking the best outcomes for my wellbeing.

Beyond the medicals, I decided I would not live as if I was dying, for in whatever time I have left, I could live a fulfilling life. I have done a postgraduate course, travelled the world, fallen in love, and am planning a new chapter in life.

With reference to the booklet, I was given on the day of my diagnosis, on skimming through, the expected reactions after a diagnosis were denial, shame, anger, fear, sadness and depression, guilt, and confusion. I told the nurse who was crying at my plight, that this booklet is missing the most important message on such a life-changing event, the message of hope.

Before I put the booklet away, I wrote on it, HOPE, BELIEVE, LIVE and that is what I have done since then.

Gratitude

I am thankful for the grace of God that has sustained me, the love of my partner, Brian who in immeasurable ways has encouraged and buoyed me in difficult times much as we share the reward of happiness and companionship.

My best friend, Kola who never let me fall to the ground, the de Wolf family, my neighbours who were there to love and bear me up, John Coll, of blessed memory, and my ex-partners, Marc and Steven, still there with all consideration and friendship, old friends as Peter, Kayode, and Ola, new friends made who have brought new perspectives with the celebration of life, Bisi and Funmi.

My longsuffering parents, troopers and allies in ways beyond compare, my siblings all, prayerfully supplicating on my behalf, I suppose, there is a lot to celebrate about life itself. Yet, this story can never be fully told, at least not in a blog, it is just a sketch of what life has been.

References

Blog — A primer on cancer and chemotherapy (2009)

FOR AKIN — …on bravery, honesty and thriving. (2017)

Blog — How I battled HIV stigma (2021)

The Hospital blogs (September/October 2009)

In hospital to kill the pain

Golden red and painless

The looming abyss of a deep biopsy

Seeing hospital meals again

Getting off the pain train

Crutches on the drip

A relocation from the cacophony

Scuttling cancer with chemo

Nausea abates by suppository

A slumbering machine operator

Waiting for chemo

A life of cytostatic ostracism

I’m alive after my autopsy

One more night

Home — At last

Originally published at https://www.akinblog.nl.

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Akin Akíntáyọ̀

ICT consultant, blogger, traveller, observer & anglo-Nigerian. ReTweets are my prerogative. I do NOT suffer fools gladly, no not once.