(Contains mention of Long Covid experiences and suicide as well as Covid-19 fatalities)

On New Year’s Eve 2019/2020 I partied (as on many previous occasions) with friends at the historic south London LGBTQ+ drinking establishment The Royal Vauxhall Tavern. On this occasion however, there was an underlying tension that manifested itself in nervous laughter and the somewhat restrained tone and timbre of our usual merrymaking.

Waiting elbow deep at the sweaty bar, a flirty fellow reveller whispered in my ear, ‘I would love to give you a New Year kiss handsome, but I’m not even sure we should be here at all. They reckon that virus from the Chinese wet markets might already be here.’

Now for those of us who had survived the onset of AIDS in the early 1980s, the palpable tension in the air that NYE night was horribly familiar as many gay men (including myself) of a certain age vividly recall learning for the first time of ‘GRID.’

‘GRID’ or ‘Gay Related Immune Deficiency’ was the original name for AIDS, named after public health scientists, noticed clusters of Kaposi’s sarcoma and Pneumocystis pneumonia, initially in gay males in New York and California. What happened next was (and still is) terrifying and a reminder (should we ever need it) that some people do genuinely hate other humans simply based on who they were born to be, who they are attracted to and who they love. 

For gay youth of the 80s, negotiating a hostile education system under Thatcher’s Section 28 (prejudicial legislation that essentially prevented schools from preparing young LGBT+ people for healthy and safe consensual adult relationships) enabled the internalisation of toxic messages from other school kids, the media, some faith leaders, some politicians and some civic leaders that they had not only caused AIDS (they had not) but shockingly that they deserved to die of AIDS for simply being themselves. For some LGBT+ young people (including myself) neurological pathways rooted in shame formed as a result, leading some to them take their own lives, or not care enough about their own lives to care about those of others, or simply to fall for the lie that they deserved AIDS and actively sought to become HIV positive. Sometimes a fight becomes exhausting, and it can feel easier simply to give in.

What started as a frightened whisper amongst gay men in the Castro rapidly became a deadly roar that still echoes around the world to this day, in some cases still resulting in AIDS related deaths where highly effective HIV prevention medications can’t be provided, afforded or sourced. Apart from the HIV virus itself, many LGBT+ people bitterly recall the criminally slow response to the onset of AIDS from key world leaders including Margaret Thatcher and Ronald Reagan. In response to this shameful procrastination many activists felt compelled to form organisations such as the Terrance Higgins Trust and Act Up, both still working to raise awareness and improve the lives of people with HIV or AIDS through direct action, research, treatment and advocacy. I honour their courage.

The trauma, tragedy and the unwarranted stigma and shame associated with this period meant that many struggled on for decades with various degrees of PTSD and survivor’s guilt. In the UK at least, it would not be until 2021 that Russell T Davies’s series ‘It’s A Sin’ would finally (and thankfully) open up broader societal conversation and awareness of the injustices that cost so many young lives and caused so many young LGBT+ people to die alone, feeling shameful or rejected by their families.

As a result of It’s A Sin (and for the first time in my fifty plus years of life) in schools and workplaces, predominately non-LGBT+ spaces I finally experienced rich conversations about the real events the drama presented. Finally, after decades, an often-hidden collective trauma was allowed to begin a process of healing in the time of a new pandemic that threatened all our families. I’m grateful to Russell T and his cast and company, but it should never have taken until 2021 for the wider public to reach this broader place of empathy and awareness. Contrast and compare then, the relative speed that global politicians (rightly) took to address Covid, a virus potentially affecting the wider population, in stark contrast to their predecessors’ shamefully slow responses to HIV/AIDS which was erroneously thought (initially at least) to be a ‘gay plague’.

Dancing the night away at the Royal Vauxhall Tavern on New Year’s Eve 2019/20 a memory arose of me dancing in a Leicester gay nightclub around 1984 alongside several gaunt young gay men attempting to conceal AIDS related facial muscle wastage and/or Kaposi’s sarcoma lesions under their baseball caps. Once upon a time in the same space they had sought to catch the eyes of potential lovers, now their eyes gazed only downwards at the dancefloor, the light dimming noticeably in their youthful eyes. I couldn’t sometimes help but feel that I was dancing on the sinking deck of a ship as it slipped beneath freezing waters and there once again at the Vauxhall Tavern, on New Year’s Eve, the sense of dancing as the ship sinks crashes over me in chilling waves, as a new potentially deadly virus comes to town.

In early March 2020 I was honoured with an award at the World HRD Congress in Mumbai and invited to deliver a keynote. On arrival I was warned by organisers that there would be a number of empty seats in the auditorium. Many international delegates were fearful of travelling as Covid began transmitting well beyond China. Mumbai was an inspiring and joyful experience, but as I flew home above, the twinkling lights of London, I feared for what humanity might face over the coming months. Despite my fears, Covid felt strangely abstract, remote, distant and something that happened to someone else.

I was wrong. 

Several days after my return from Mumbai on March 17^th 2020 I’d been out for a drink (in a noticeably quieter Soho) and was at home watching images of Italian civilians in lockdown. I raised my eyebrows at the patently ridiculous decision to allow Cheltenham Races to go ahead. All of my education consultancy work had been cancelled and even Parliament (where I worked two days a week) had shut. My phone suddenly buzzed- a text message from my younger brother, informing me that both he, his wife and his young children all had Covid-19, probably a result of my musical brother playing in a band in bars at Cheltenham Races. Initially I didn’t know what to say or do. I wasn’t sure how my elderly parents (one of whom has dementia) would take this highly concerning news.

I texted my brother back and told him to rest up and to call the hospital. He experienced violent convulsions and was lost (in his words) in an ‘agonising fog of pain and exhaustion’. After a week of lying in bed barely able to move even his eyelids, an ambulance was called and he was rushed to Cheltenham hospital where, within a day, he ended up in critical care and was told to prepare his family for the fact that he might not be returning home. The same evening, I learned that two relatively young gay men in my social circle had died of Covid, one alone at home after being advised to stay there by an NHS helpline. The next day I learned of the suicide of a fifty-six-year-old gay man, who left a note stating that he’d survived one pandemic but simply didn’t have the emotional energy to survive another. Covid no longer felt abstract, remote, distant and something that happened to someone else.

It was within us, within my families, both biological and logical, only this time around it was perfectly acceptable for my brother and parents to openly throw around terminology like ‘viral load’ a sign that maybe the world is changing perhaps.

My brother stabilised and within a week was discharged. However less than a week later, he was hospitalised again. Shortly afterwards, my phone rang via Facetime, it was my brother, gasping for air on an oxygen mask, unable to speak, waving one finger and apparently saying goodbye. For a moment I remembered my father, gasping for air under an oxygen mask as his lungs failed and he slipped away forever. No one can prepare you for such sudden moments of visceral trauma. I told my brother (as I had once my father) that I loved him and when he visibly tired I ended the call wondering if I would ever see him again. Ultimately (gratefully) he survived, but Covid had changed him in the same way it has now several year later, changed me. Those few weeks in March 2020 still affect my brother’s daily life and he went from having COVID-19, to living with what’s become known as ‘Long Covid.’ Increasingly research shows Covid COVID-19 causes a host of neurological issues, As you might know, the list of long-covid symptoms is long and varied, and often different from individual to individual.

In my brother this has manifested ever since and to various degrees in the form of:

• Post-Viral Fatigue
• Brain-fog 
• Problems finding words. 
• Problems swallowing 
• Gasping for air
• Swelling, numbness and pins and needles.
• Forgetfulness 
• Gastrointestinal issues

My brother finds it embarrassing, emasculating, and debilitating and of course there are ongoing psychological issues associated not only with the trauma of what happened (and what nearly happened) but also with re-negotiating family life and work with a disability and let’s be very clear, Long Covid is just that.

Ultimately, I would lose several family members to Covid. I also know of forty-six gay men who died either of Covid, or from losing hope and committing suicide alone during lockdowns, or from existing health conditions that were not managed effectively during the pandemic. Forty-six unique souls, around half of whom who were of an age whereby they survived the onset of HIV/AIDS, only to lose hope or be struck down in present by a new virus. Some just might have lived long enough to have experience the catharsis of It’s A Sin, I hope they did.

Eventually the lockdowns ended, and we were encouraged to return to work, to keep calm and carry on and boost the economy without even the respectful dignity of a shared moment of national solidarity or mourning. Our late monarch’s passing took up many days, but for those many of us lost, there has been nothing, no closure, no national recognition. Only tawdry revelations of a despicable government who partied as loved ones died alone and isolated.

Never forget that. 

Covid-19 finally came for me in September 2021. Having been very careful and avoided it so long, I felt ashamed that I had somehow let my husband and family down by becoming infected. On reflection these feelings stemmed not from Covid, but from experiences of internalised shame that first took root the 1980s in the shadow of Section 28 and AIDS. 

I’ve now had Covid four times, maybe five. My first two infections followed a pattern, flu-like when I had it, but it in the weeks and months afterwards taking a greater toll. Being also asthmatic, I found that post Covid colds and flus hit my chest much harder than before I ever tested Covid positive. My initial run in with Covid was characterised by severe pain in the back of my eyes, causing light sensitivity. Even now, well over a year later, as soon as I start to feel tired or get a cold, painful over senstive eyes are the first sign of trouble.

In May 2022 I got Covid for a third time. Whilst it was unpleasant at the time, once again, it was in the weeks and months afterwards that my problems really started. All of the issues my brother previously experienced came knocking at my door, resulting in days off sick and workplace adjustments plus significant loss of income for my education consultancy. My mental health is strongly linked to my ability to take regular exercise in the form of long walks and lifting weights at the gym. Throughout 2022 my ability to do either was significantly compromised by a lack of energy and exhaustion. My public speaking was compromised by forgetfulness, stuttering and low energy. Then the school cold and flu season proved challenging with each new infection re-triggering some of the symptoms associated with Long Covid. Then there is the impact upon mental health socialising and wellbeing. By January 2023 I had finally just started to feel a little like more like me, yet each time Covid has come knocking I feel less like my old self mentally and physically and that scares me. In February 2023, just prior to my fifty fifth birthday I tested positive again. This time whatever strain I caught brough some new and unwelcome symptoms including:

 

• Stuttering, saying random words

• Not always able to see letters and numbers correctly
• Reversing or jumbling text or numbers when typing and writing  
• Sudden energy loss. dizziness and need to sit or lie down 
• Forgetting things-going blank-disorientation
• Time jumps/gaps
• Cognitive processing and physical actions slower  
• Loss of focus -visual disturbances 
• Chest and muscle pain
• Numb and tingling limbs 
• Exhaustion 
• Wheezing, breathlessness 
• Some existing conditions exacerbated. 
• Sleep disturbances 

All of the above continue to impact on me today and I suspect, just like my brother, they will continue to impact me in various degrees for perhaps years. 

It took me nearly a year to get my first appointment with a Long Covid clinic. The government advice to schools is that we shouldn’t be testing if we think we have Covid, unless we are in contact with vulnerable people. However, in any workplace or school, direct connections to vulnerable people exists every single day. Please keep testing if you can and please consider the potential impact on those around you of knowingly spreading what is about not a cold or a minor infection. I now dread the colleague or the person on the bus, (who might be wearing a mask but don’t count on it) who says ‘I’ve still got Covid but I need to get out and about, it’s only like having a cold now anyway.’

Don’t be fooled; Covid-19 destroyed many lives and it absolutely still is– even if in subtler ways. 

It seems the Conservative Government’s commitment to partying, power grabs and stoking culture wars take precedence over safety, decency respect and compassion. Those of us who lived to remember Section 28 and the shamefully slow response to the initial wave HIV/ AIDS sadly learned this a long time ago. 

Keep testing, keep taking care of yourself and others. Covid is certainly not ‘just a cold’ but I sincerely hope one day it might be.

Until then, believe me, Long Covid sucks.

Shaun Dellenty 15/03/23

Long Covid Awareness Day 2023