Thought Picnic: Success, Suffering, and the System That Fails Both

The Illusion of Success

Sometimes, success appears to be a façade amid emotional turmoil, the vulnerabilities that are part of life's struggle that no one else sees. There is an assumption that if you have the means and cachet to buy anything, then you are suitably supplied to purchase your salvation.

Society simply does not recognise the struggle of the successful as legitimate. There is little sympathy for those who appear to have everything, and this dismissal creates a terrible sense of isolation in which high-achievers quickly learn that their struggles will not be taken seriously.

Misunderstanding Resilience

There is also a misguided understanding of resilience. Indeed, many of us do exhibit herculean feats of resilience against adversity, fighting storms of life that threaten to overwhelm us, but something inside refuses to give. Belief, faith, grit, or sheer guts: we are bowed but not broken, attacked but never defeated. We become the narrative of possibilities that once seemed insurmountable.

Yet this very resilience can become a trap. High-achievers are often driven by perfectionism, a relentless internal standard that demands excellence in all things. Mental illness does not respond to willpower or determination in the way that professional challenges do.

You cannot work harder to overcome depression. You cannot manoeuvre your way out of bipolar disorder. For someone whose identity is built on achievement and competence, seeking help feels like failure, an admission that you are not as capable as you believed yourself to be.

Recent Tragedies

Two stories in recent times have got me thinking that many mental health struggles are barely addressed or are given the stiff-upper-lip treatment of “you'll pull through as you always do”. We give just enough space not to interfere, and then the news drops: those stalwarts of stoicism, or what appeared to be that, have taken their own lives.

Robert Carradine, 71, died by hanging last week; he had been diagnosed with bipolar disorder. I am in South Africa, and I have just read the news that Ian von Memerty, 61, who was Zimbabwe-born and a South African entertainer who hosted some popular television shows, had died by his own hand in Johannesburg. He had long written about the desire to take his own life.

The Reality Behind Success

None of this brings any comfort because these are successful men who had tasted the kinds of worldly success that many could not even dare to dream of, and yet it is their demons that have driven them beyond the edge of despair to suicide. The fact that these men are quite close to my age range also indicates that you probably do not grow out of the things that ail you.

Success often brings its own form of isolation. As you rise in your field, the pool of people who can truly understand your experience shrinks. Your old friends may feel the distance growing. Your new peers may be competitors rather than confidants.

The high-achiever becomes trapped in a gilded cage, surrounded by admirers but profoundly alone. This loneliness compounds mental health struggles, leaving fewer people to turn to, fewer spaces where vulnerability is possible, and fewer relationships where you are seen as a whole person rather than as your achievements.

There are also practical fears that make seeking help feel dangerous. Will your employer question your ability to perform? Will clients lose confidence in you? Will colleagues see you differently?

Despite progress in mental health awareness, significant stigma remains in professional environments. For high-achievers whose identities are deeply intertwined with their professional success, the risk feels existential.

When the System Fails You

Moreover, even when they overcome these barriers and seek help, they often find the available support inadequate for their specific needs. Therapists may struggle to understand the unique pressures of high achievement: the constant scrutiny, the isolation that comes with leadership, the weight of others' expectations.

The two times I have used therapy, because I presented none of the symptoms of depression, suicide, or a mental health crisis, it was felt I was trying to abuse the service. Yet, I had a compelling narrative. I was recovering from cancer, mounting debt meant I was about to lose my home, and my status was rock bottom.

Surely, with such a catastrophic change in life, I was a candidate for therapy. I guess because I had a modicum of coping mechanisms and I was too articulate for my situation, only shocking assertiveness could pierce into the needed support framework.

The scheduling demands of high-achievement careers often conflict with traditional therapy models, yet their chaotic schedules are often part of what is driving their mental health crisis.

Bridging the Gap

It is impossible to tell how much help, consideration, or support Carradine and von Memerty got through their struggles. For their survivors, bridging the gap between the sorrow they feel and appreciating the release that death brought to the suffering of their beloved ones is something you cannot begin to fathom.

Perhaps the most fundamental challenge is the myth of self-sufficiency that high-achievers internalise. They have succeeded through determination, intelligence, and hard work. This creates a belief that they should be able to handle anything, including their own mental health.

Cultural narratives about success emphasise individual agency and resilience, celebrating the self-made person who refused to give up or give in. These narratives leave little room for vulnerability, little space for acknowledging that sometimes, despite all your strength and capability, you need help.

A Personal Reflection

Even with my encounters with suicidal ideation, which I have written about as recently as a month ago, my only prayer still is never to be presented with no other option but to end it all. This is not said from any position of strength, ability, or capacity; rather, it is a recognition of human frailty and vulnerability. We are faced daily with a spectrum of mortality, but for the grace of God, there go we.

Addressing these challenges requires a fundamental shift in how we think about success and mental health. We need to recognise that achievement does not immunise against suffering, that success can indeed be part of what drives mental health crises rather than protecting against them. Until we can create space for high-achievers to be vulnerable, to admit to struggling, to seek help without fear of judgement or professional consequences, we will continue to lose talented, accomplished people to the silent epidemic of mental illness.

The deaths of people like Robert Carradine and Ian von Memerty should serve as a stark reminder that success is no protection against despair. The answer is that success and suffering are not opposites. They can, and often do, coexist. Recognising this uncomfortable truth is the first step towards ensuring that achievement does not become a prison from which the only escape seems to be death.

May their once-bothered souls rest in eternal peace.

Blog - Suicide When Academia Forgets Its Humanity (January 2026)

Blog - Thought Picnic: I think I need therapy (March 2011)

A Google NotebookLM AI Audio Overview Discussion of this blog

Men's things XXVI: Let's avoid the stigma of prostate cancer

A stigma on the prostate

Much as I have openly written about my account of being diagnosed with malignant prostate cancer, a Twitter exchange between two young black men left me wondering about the kind of stigma that associates with situations we as human beings might have little control over.

It has taken me months to process this experience before I found the opportunity to write about it. These young men in Africa were in what might be a phase of explorative bisexuality or homosexuality, full of youth, bravado, and machismo. One should not deny the youth their virility, vigour, and vitality.

Rather a living older man

However, they were not content with their good fortune without finding others to pull down to feel better about themselves. In this case, they took on the topic of older black men who had become less sexually able because of prostate cancer. The exchange was in jest, levity, and mockery; it cut quite deep.

Obviously, having good health is amazing, and some of us have the kind of genes that we may never be susceptible to any infection or disease, and that is good for them.

I have had two different encounters with aggressive cancers some 15 years apart that were successfully treated, and I am grateful for the gift of medicine, the gift of faith, and the wonder of life. I have been very fortunate.

Youthful delusions of invincibility

Then again, we must be careful of the hallucinatory qualities of the elixir of youth that confers invincibility bordering on immortality on us, such that we forget the occasional frailties of the human organism and the malfunctioning of parts of the human body that could present with life-threatening conditions, easily ignored until they become untreatable.

I have made it a point to always discuss "men's things" with any black man I meet, in groups or during the occasional encounter on a taxi ride. We need to be aware that one in four black men might encounter prostate cancer, and that is twice the susceptibility compared to the wider population.

Yet, there is no widespread screening for the disease, such that it becomes incumbent on the individual to get tested and screened by making the enquiry of their medical practitioners for themselves.

Health trumps sexual prowess

Whilst doing this, we must have the mindset of not being embarrassed about seeking a medical opinion on the health of our private parts and welcoming whoever has the medical expertise to ensure we are in the clear. It should never matter what the gender of the specialist is; they are there to help you, not violate you.

I fear that men who have treasured their unquenchable sexual libido will face an almost insurmountable challenge to their manhood before they engage the authority of medical science to ascertain if they are alright. The time wasted in addressing this personal battle can be quite costly.

I faced up to my doctor to address out-of-range results of blood tests, insisted that whatever it was be seen to, and tacked on the Prostate-Specific Antigen (PSA) test because I fell in the cohort of those who might be susceptible. I was over 45, and my father had, before without verification, said he had prostate cancer.

Be a man, get checked

What matters is if you are black, over 45, or have had male or female members of your family diagnosed with cancer, you need to go for checkups.

Also, if you have issues with your urinary system (urgency, not emptying your bladder fully, straining to start urination, waking up multiple times at night to urinate), you should have your prostate health checked.

Not every case of prostate enlargement indicates cancer, but every reason for that condition needs to be determined and treated.

Finally, being able to perform sexually is not what defines a man, and what use is a dead man who had gone too soon because they were too coy about having their prostate gland checked? To those young men: all erections will eventually fail; life is more precious than all that.

References

Blog - Photons on the Prostate - A year from starting radiotherapy

Blog - A prostate cancer diagnosis, one year on

Blog - Photons on the Prostate - XVIV - I Just Can't Wait

Blog - Men's things XXV: Prostate cancer under control

Blog - Men's things - Prostate Cancer blogs

World AIDS Day - 2023

So many friends I lost

I have lost many friends to HIV/AIDS, the first person I met who had HIV and was released from prison in France on compassionate grounds was trying to write his story with no idea of what time he had left. I had gone to help him out, on his computer; he passed on in late 1991.

Another was an opera buff, full of life, an exciting conversationalist with a predilection to a certain type. A very good friend that I had known for just over 3 years. When we gathered for his 37^th birthday, it was both a joyful party celebrating his survival and a sombre meeting that suggested we might not have another. A few months later, he had a two-page spread of a tribute-cum-obituary in the Guardian in 1994.

I guess from the late 1990s, people were not as scared of HIV, and medications were coming on-stream to deal with the worst vestiges of HIV or the progression into AIDS if the issues were attended to promptly.

Change and change together

In 2000, I emigrated to the Netherlands, and I also met many people who were living with HIV all around Europe. They seem to keep a low profile when they fell ill, and then they returned to the scene usually to tell of their ordeal and their escape from tragedy.

Also, especially with young men, some on receiving a diagnosis literally gave up and were ready to end their lives. I found myself in the role of someone who gave a new perspective to things that it was an opportunity to consider a new lease of life that makes a difference for themselves and others. Many of them are thriving and are thankfully still with us today.

When in September 2002, I received an HIV+ result, I vacillated between a fatalistic view of things and a progressively positive perspective. I had determined it would not be the cause of my demise much as I did not attend to the issues that might arise.

I sought a miraculous touch

I probably wanted something miraculous than consequential medical intervention. I attribute that sense to the kind of religious beliefs I had mostly been exposed to.

To that end, as my health began to deteriorate with the advent of AIDS in the time from mid-2008 onwards, I felt I was still doing fine until what presented as athlete’s foot was determined to be an aggressive skin cancer, kaposi’s sarcoma. Now, that was life-threatening, and in September 2009 I came upon the full diagnosis that was treatable if I responded to the treatment or in the words of my consultant, I probably had only 5 weeks to live.

My response to the treatment from medical observation was by its rapidity from arresting AIDS, clearing up the skin lesions and fungating tumours, and bringing my viral load to undetectable levels, miraculous. My body was saved, but everything else lost, that I had to start all over again.

What works, works well

In that time, I lost other good friends who had HIV to other attendant ailments that might or may not have been related to HIV.

I am fortunate and grateful, and the antiretroviral medication works for me, I have been on the same regimen for over 13 years with no need or inclination to change it for anything else. My biannual checkups keep a view on all the internal and organ functions allowing my medical team to address issues with alacrity.

Obviously, there is the issue of stigma usually borne of fear and ignorance, you still need to be careful who you reveal your status to, especially where you are not aware of their understanding of developments and messages that now attend to the living with HIV.

My thoughts on World AIDS Day

World AIDS Day for me is a day of recognition and remembrance; the many amazing lives lost in their prime, the stories that did not get told, and the suffering that happened in the private and public compounded by prejudice and discrimination. The triumph of humanity over adversity and the celebration of life beyond infirmity and tragedy.

Most of all, it is one of possibilities; HIV is not a death sentence, it is the beginning of the answer to the question about living a fulfilling, glorious, and impactful life. For that, I want to tell stories, even better stories, and the best stories that Brian and I can write and tell together.

World AIDS Day – To life and living well.

Let's not stigmatise personal fundraising like GoFundMe

Let’s unstigmatise GoFundMe

There is an undercurrent of concern and stigma accompanying the use of GoFundMe to attract funding for whatever cause or issue you might have. It is probably that concern and fear of stigma that meant I did not resort to this model of making people aware of a situation I need some help with.

I can appreciate that GoFundMe seems like a mendicant shaking a begging bowl on the sidewalk (properly a pavement in English), but that is to misconstrue the value of social networking and seeking the friendship, the support, and the generosity of other people towards something you have limited resources to finance.

Utilising my social media network

It need not be that way, as I have benefitted immensely from the use of my social media networks to first inform and then gain support. My blog has been prominent in that regard where a doctoral student in Canada sponsored my blog for a year, soon after I ran out of funds when I had cancer.

Then, I had a World Bank executive contact me on reading a pertinent blog I wrote in 2012; after a conversation, they wired $5,000 to me, no strings attached, just something to support my endeavours. Obviously, I have not monetised my blog, that is not the purpose of my blog. Rather, I write stories; stories about me, what I see, how I am affected, or just to proffer an opinion.

On LinkedIn, I have had jobs offered without having to interview, again, it is not that all these things happen always, but to ignore a social media following on the many platforms that you engage when things are going well but go quiet in adverse conditions is to forget the amazing usefulness of networking for all sorts of life situations.

GoFundMe is open for all causes

One look at the GoFundMe Fundraiser start page, there are many categories of fundraising, all to varying degrees of criticality and importance, but we should be careful that we do not determine to rate one need more than another as if it is a competition to suckle on the milk of human kindness better than the other person.

Yes, Funeral and Medical needs could speak to life and death issues, but people can also fundraise for others or themselves, for causes or interests in as varied areas as Emergency, Charity, Financial Emergency, Animals, Environment, Business, Community, Competition, Creative, Event, Faith, Family, Sports, Travel, Volunteer, or Wishes.

Crowdfunding is not criminal

GoFundMe is simply another crowdfunding platform, primarily a donation-based crowdfunding with charitable to a wide range of funding requirements for which there is neither financial nor material return to the donor apart from the satisfaction of helping someone else in some need of help or support.

I published a GoFundMe page to address a simple issue, I need to take some time to study and gain some new vendor certifications to give me better job opportunities for which I have extensive background experience, but have recently been quite lacking in confidence. I seek to do this in a comfortable supportive environment, and that is preferably Cape Town. I need to reboot things, I believe that is a purposeful and well-considered activity that would yield results.

We should embrace fundraising

In closing, no one should be ashamed when they have determined what they want to and have to do, to resort to raising funds for their projects. Whilst on the GoFundMe platform, many might think fundraising is just for desperate life-threatening situations, the fact is every endeavour involves a form of fundraising from personal projects and concerns, through startups seeking capital from venture capital firms to big businesses raising finance from banks, on the stock markets, or through the trade of equity.

GoFundMe simply brings the facility to raise funding for personal and community causes. To stigmatise it is to fail to understand the democratisation of fundraising brought to the lowest common denominator. I am persuaded that my GoFundMe drive is going to be extremely beneficial to changing my circumstances, no one need be concerned or ashamed by the use of it. Thank you.

 

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^th of 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 22^nd of September 2009 and began antiretroviral (ARV) treatment on the 30^th 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 5^th of October 2009 and 6 subsequent courses to the 8^th 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

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.

Blog - Thought Picnic: We Never Knew What a Healthy Sexual Relationship Was Because ...

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

Normalising HIV Challenge against stigma

A challenge worth entering

One thing I have learnt about Social Media as I am just an amateur is that you never know what you post that might catch fire and go viral.

Just over two days ago, I joined the Normalising HIV Challenge with the hashtag #NormalizingHIVChallenge, the American spelling notwithstanding. What it involved was a short profile of oneself, one’s HIV status and what one is doing about it. Then, you can add a tagline.

This was all in aid of banishing HIV stigma, for there are many who are HIV-positive and living normal productive happy lives, going about regular and exciting activities the pills helping a long way.

#NormalizingHIVChallenge

Name: Akin
Age: 54
Home: England
Occupation: IT Consultant
Relationship status: Engaged
HIV status: Positive 2002, AIDS 2009
ARVs: Yes (Since September 2009) and undetectable

I'm not dirty and clean is when you've had a shower.

— Akin Akíntáyọ̀ 🏳️‍🌈 #European (@forakin) September 28, 2020

I posted my tweet with the tagline, “I'm not dirty and clean is when you've had a shower.” This comes from what I have seen on certain profiles or in conversation where you are asked if you are clean. By implication, anyone who is HIV-positive is not clean or consequently dirty.

Courtesy of The Stigma Project

Blog - Dealing with sexuality and HIV stigma

Blog - Experience is not enough to teach you to understand things

Clean after a shower

This is after well-published and peer-reviewed studies that show HIV-positive people on antiretroviral drugs and by consequence with undetectable viral loads cannot pass the virus on to sexual partners. We can live healthy and passionate sex lives under the right medical supervision.

It does not mean we should be reckless with our sexual health, regular check-ups are necessary and it is unlikely that anyone who is HIV-positive is not completely clued in about this. Yet, ignorance persists in communities that should know better and the wider public who are usually deluded into thinking they are safe without any awareness of their real status.

Owning my experience

Literally, all the responses to my tweet have been supportive apart from one where the person in his cynicism thought I was being paid to demonstrate a false status in my search for clout and to trend. It was a shame that after he apologised, he deleted his tweets and then blocked me, out of embarrassment or shame or the inability to face up to his calumny, I would not know.

However, this much I know, a long time ago, I decided to own my situation, understand my condition and share my experience, if, in any little way, it might help others.

I know there are aspects of life I went through that others might well relate to and seek prompt medical attention rather than delay it. As I alluded to in the blog below.

Blog - When I had the murderous cancer of denial

Even this is normal

For the commendations of bravery or daring, I am thinking of neither, rather it is a simple case of acceptance, I am already a miracle of medical prowess that has come of the body of knowledge acquired through the medical interventions in other lives affected by HIV and related medical conditions. Forthrightly, I have to live with what I have, if I can't, what is the point of living and where is the joy of living?

We will continue to challenge HIV stigma, not so much to normalise being HIV-positive, but to aver that regardless of your HIV status it should not define you and you can live normal and amazingly productive lives. That is the goal of #NormalizingHIVChallenge from my perspective.

Experience is not enough to teach you to understand things

Ignorance is a comfortable shelter

Experience is no guarantee of a quest for knowledge, or enlightened understanding of a situation. Nowhere is this more obvious than what I have seen of the broader gay community’s understanding of the core science and social issues pertaining to HIV/AIDS. [POZ]

Despite the public information and community activities promoted by many LGBTQ+ organisations to people, in places, and at events, the appalling ignorance of people to these issues is frightening.

Now, I do not intend to use this blog as an education aid, there is enough for people to search for and update themselves if so interested. However, I was reminded of a conversation I had years ago when someone aware of my situation treated me with disdain, disgust, and revulsion.

Quite inscrutable to understanding

It did not bother me; I have been a recipient of too many negative attitudes to be concerned about the chance encounters. What surprised me was when this same person years after the first brush informed me his parents have been HIV+ for over 20 years.

I held myself back from saying, how can you have this disease embedded in your family and then treat others badly? I could not understand how he until recently had not acquired knowledge or insight to interact with others with a sense of humanity. The absence of curiosity that belied the original conversation was baffling in the light of the shared experience.

It might well be that seeing his parents who he says are thriving today, on their antiretroviral (ARV) medications and in rude health, there were times in the past when they were poorly and ill, that witnessing those times had mentally scarred him. I did not probe any further, I was just weakened by the thought that experience is no impetus for understanding the ‘how is’ or ‘why is’ of anything.

Mind your language

There needs to be something else, an ingredient of curiosity and determination to learn and appreciate things. There are some many things to understand, the vagaries of prevention (PrEP), exposure (PEP), testing, viral load, CD4 counts, and social campaigns on U=U.

Fundamentally, there is also the matter of language and stigma, people with HIV are not dirty and conversely, not knowing your status if you are sexually active does not make you clean. Whatever your preferences, the greatest thing you can do for human dignity is to treat everyone with consideration, courtesy, and respect. Education is a good thing, with your learning, seek to understand the seemingly difficult and taboo things. [Counselling Today]

Blog - Dealing with sexuality and HIV stigma

Courtesy of the Stigma Project.

World AIDS Day 2017

It’s strange, I’m in a different place,
As if I had run a really hard race,
In all the sweat and toil, I found grace,
No plans I made could ever retrace,
The steps that brought me to this place.

In the days and times of great pain,
Before my eyes, it laid so plain,
That the things I had worked hard to gain,
Were nothing if this scourge left me slain,
I learnt many lessons on the power of pain.

We who live as it courses through our veins,
And stand as beacons to hope that reigns,
With our HIV we run knowledge campaigns,
That AIDS and stigma won’t keep us in chains,
To know for sure, do take a prick to the veins.

With condoms maybe you’re protected,
Without it, know the risk of getting infected,
I take my ARVs as the doctor intended,
By PrEP or that, we know life is extended,
On being undetectable, we’re all protected.

The story that weaves a curtain of loss,
It was a death sentence not giving a toss,
Our knowns and holds beyond it cross,
Every World AIDS Day is not a gloss,
But one to give meaning and purpose to our loss.

Dealing with sexuality and HIV stigma

 Courtesy of The Stigma Project

In a perfect world

A few weeks ago, I saw this on a dating profile, “In a perfect world, the positive would be open and the negative would be open-minded.” The reference to positive and negative in that statement referred to HIV.

Unfortunately, there is very little knowledge of what HIV is and how it is different from AIDS. This ignorance then feeds into stigma and prejudice against people who happen to be HIV+ (HIV positive).

Yet, there is so much knowledge out there about HIV, AIDS and the treatments that give people opportunities for long productive normal lives, even if there are very few who show any interest in understanding this condition and how it is managed.

My work and my sexuality

In a conversation at work yesterday where many of my colleagues are well aware that I am gay and interact with me like any normal friendly person because I am not going to hit on people in lascivious abandon, just as people who are straight don’t lose their self-control and awareness just because they are attracted to other people, this inadvertently became a topic of conversation.

I had already shared the blog written by Funmi Iyanda about me with my closest colleagues, much of which was not news to them, the conversation is broad including what you might expect from both gay and straight relationships. For a long time in my working life, I have refused to pretend to enjoy homophobic jokes and giggle away with the punchline whilst concealing my sexuality, there is nothing to gain in accepting a situation where you are indirectly the object of abuse and you maintain your silence.

I do not go out of my way to inform people of my sexuality, I do not wear it on my sleeve, but if I am asked a direct question or enquiries are made of my domestic arrangements, I will truthfully tell people about who I am.

Knowledge and information

So, as we were chatting about the fluctuating weights of middle-aged men, I alluded to the fact that I lost a quarter of my weight when I had cancer. The next question was about what the cancer was and how it came about. The cancer was Kaposi’s Sarcoma and it was brought on by as then an untreated HIV infection.

This was divulged to two colleagues with whom I had never had this kind of conversation before, but we have a very good and friendly working relationship. In fact, I first was hesitant before I revealed this condition, the hesitancy borne of experiences with ignorant people who have balked, scooted, blackmailed or involved the law about my status, and I have been no threat to them.

What is even more surprising is when homosexuals and bisexuals who present a risk profile of sorts are completely oblivious of all the basic knowledge of HIV, AIDS, PrEP, ARVs, Viral load, Undetectable, CD4 counts and much else.

On stigma

As the conversation developed, I was taken aback by the interest of my colleagues in the detail of HIV, how it is managed, what life-expectancies are and the stigma that still accompanies being HIV+.

The sincerity and sanguinity they showed was a teaching moment for me that I returned this morning to thank them for their being open-minded and understanding.

On the matter of stigma, nowhere is it felt more than in the gay community when an encounter includes the anxious and atrocious question, “Are you clean?”, which by consequence suggests if you are HIV+, you’re dirty regardless of whether you are on treatment, have an undetectable viral load, are healthy and doing fine. Questions like this mean people do not discuss their status that freely.

The irony of this kind of conversation is the number of people who are in fact, HIV+, but have never tested, don’t know their status and assume there are HIV- and consequently, ‘CLEAN’. Apparently, 1-in-6 people in the UK do not know they are infected. Some of those people project that Clean/Dirty stigma. [Metro]

I say to them, “Clean is when you’ve had a shower and nothing else.” It should never be a euphemism for health status and thereby a vehicle for stigma.

Further Reading

Blog - A primer on cancer and chemotherapy (2009)

Searching For A Cure For HIV And AIDS [Avert]

The Stigma Project

FOR AKIN - …on bravery, honesty and thriving.