Positive 21 - Challenging HIV in the 21st century

Positive21 - A peer support group for gay, bisexual & MSM men living with HIV


Positive21... How it began

Back in the early 80’s, many will recall that there was very little information or knowledge about HIV/AIDS and no available combination treatments. Thousands, if not tens of hundreds of thousands of people in the gay community around the world suffered, often losing their battle with the virus. People lived in fear of not knowing if they were going to be next or, if they were going to receive a call, telling them that someone they knew and loved had either been diagnosed with or had passed away because of the virus.

Gay people rallied and stood united globally, doing what they could to fight HIV/AIDS. The community was heavily stigmatised, with the virus being referred to as “the gay plague”. As the epidemic spread, nothing could prepare us for what lay ahead. The urgency for services and development of organisations to help support people and combat HIV/AIDS became critical.

Within a short period of time, various support groups, charities and organisations began to appear in the UK. To name a few, Gay Men Fighting Aids Charity as it was known back then in the 80’s (now known as GMFA), The Mildmay and The London Lighthouse, Ladbroke Grove, West London, which is where my own story begins.

The London Lighthouse was a centre for people facing the challenges of HIV/AIDS. It was a place where people went for respite, convalescence and predominantly palliative care, but it was also a place where people could be amongst others facing the same challenges, within a safe haven. It was a place to have a meal or a coffee and a friendly chat with someone and without any fear of being judged or rejected but instead an environment that gave unconditional love and support, to everyone, a place of sanctuary for many, in their hour of need.

This was not just my own perception and experience of the London Lighthouse, but it was also felt by the many who like me had also visited. I was moved by the intensity of love that was present there, the level of care shown to everyone by the nurses and volunteers. I was so thankful and took solace in knowing that those close to me whom I was visiting and everyone that was on the residential unit were all being looked after, with their dignity being preserved.

As the HIV/AIDS epidemic grew so did the level of service and care that London Lighthouse continued to provide.

Having lost a number of my dearest friends to the virus I began volunteering at the London Lighthouse on the residential unit. Within six months of being there, I was asked if I would be interested in working with one of the Charge Nurses, co-facilitating a quarterly training programme for new volunteers wanting to work on the residential unit. The programme was a nursing skills training course, its aim being to help people develop key skills for assisting those in care; helping them move around in wheelchairs, changing bed linen of those confined to bed, various lifting techniques to assist in getting in and out of bed and from chair to chair, as well as feeding techniques for those no longer able to feed themselves.

The residential unit was the most emotionally highly-charged environment within the London Lighthouse. Many volunteers found they weren’t able to cope working in the unit after their induction period, encountering many forms of illness caused by the virus and dealing with those on palliative care. Those of us who were able to work on the residential unit would experience, more often than not, heart-wrenching, upsetting and traumatic situations when the lives of people we cared for helplessly slip away. Some of the unit’s residents had sadly been abandoned by their families and partners because of their illness and only had the nurses and volunteers to rely upon to support them, to be there for them, by their bedside, to comfort them, holding their hand until their moment of passing.

As volunteers, we also had to find our own inner strength — as indeed did the entire medical team — to maintain our composure in order to support the many families, friends and partners who were distraught and bereaved by the loss of their loved one.

Throughout my time at London Lighthouse, and during the years that followed, I wondered if this could also be my fate. Would it be a reality for me too one day? How would I cope with knowing that my life was going to be taken sooner rather than later? Would my fate be the same, or could it possibly one day be, with a different conclusion?

I learned so much, about how fragile and precious life truly is, as people embraced what time for them was left, making every second, every minute of that time special and meaningful, sharing it with all those around and close to them. They showed us just how precious life is. To mark that point and to show our respect for human life and more, The Red Ribbon Project was created by the New York-based Visual AIDS Artists Caucus in 1991. The symbol represents demonstration of compassion for people living with AIDS and those providing care. The Ribbon was inspired by the yellow ribbons that honoured American soldiers serving in the Gulf war. The colour red was chosen for its connection to blood as well as the idea of passion. It was first worn publicly by celebrity actor Jeremy Irons at the 1991 Tony Awards. The ribbon soon became renowned as an international symbol of AIDS awareness. December 1st became World AIDS Day globally, a day in which we all come together as we have done since the epidemic began. A day of remembrance, a day of memorial to honour those who lost their lives to AIDS.

We shall remember them.

In the mid 90’s came the news of a major breakthrough that was to change the world of HIV AIDS treatment, the arrival of combination therapy. A new hope and beginning for positive people began to emerge globally. There was now medication that would help to sustain life.

I left London Lighthouse some years ago now, but ever since then I have had the feeling that I would one day find myself working within the community that work, focusing on HIV. I had various occupations over the years that followed, also returning to college to train as a training officer/facilitator, as well as qualifying as an MTI holistic massage practitioner. At one point I left London, returning some 5 years later. It was on my return things for me were about to change when, on a day in October 2009, I was diagnosed HIV positive.

Being told you’re HIV Positive is a life changing experience; everyone deals and processes that information in their own way as best they can. For a very small handful of people, that news is a case of unfortunate circumstance of life. They can accept, adjust and seem able to move on with life quite quickly. For others it’s quite a different story. It’s terrifying news and sets off many fears - being rejected and judged, forcing some to withdraw from the world as they knew it and into a life of isolation and loneliness.

I wasn’t going to allow that to happen to me — I couldn’t. No matter how lonely and vulnerable I felt or how upset about the news, I had to learn how to accept and deal with this. I wasn’t going to hide away in shame, guilt, or be made to feel dirty for being HIV positive. I was going to fight back and not let this virus or anyone bring me down or make me feel less of a person, as society had once done so cruelly in years past to those we lost. Sadly, after years of the gay community enduring so much, there is still a great deal of stigma to this very day.

After taking time to digest and process the news of my diagnosis and the accompanying roller coaster of emotions, I thought back to that place when people were diagnosed and what the reality of life was back then. I realised, I was indeed to experience a very different reality. With support from my closest friends and my family members whom I disclosed to, I was able to face my diagnosis, with every reason to look forward to a future. I was still the same person I was 5 minutes prior to being given my diagnosis.

Knowing my status has saved my life and with combination therapy I now have an undetectable / untraceable viral load. I was determined to govern my life and not let my HIV do so. When ready and able, I would do something to help support others within my community. I attended a Newly Diagnosed course, something I was very glad to be available, and because of the further help and support it gave me. It also provided me with updated information and knowledge of how much things had changed around HIV and combination therapy. Once I had completed the Newly Diagnosed course, I then attended a couple of peer support groups and then moved on.

On the 25th June 2012, a new weekly peer support group for London called Positive21 was launched. Positive21 is peer support group for gay, bisexual & MSM men of all ages, who are facing the challenges of HIV in the 21st Century.

Positive21 was founded and is peer led by me, with no financial assistance from the state but instead funded from my own finances and the generosity of a few friends who have helped me with some marketing materials and the building of the Positive21 website, as well as donations from members of the public.

Because of the increase in people wanting to access the services that Positive21 offers, in March 2016 Positive21 was granted Charity status. The number of service users continues to grow. A handful of people have written personal testimonials which are on our website, sharing their experiences, their journey and how much their lives have changed since finding Positive21.

Positive21 has been recognised for the crucial services that are offered to those who access our Charity and by those who recommend or refer to us and it is in their opinions and of group members, clinicians, therapists, etc that Positve21 has been recognised as one of London’s most successful HIV peer support charities in recent times

In 2015 Positive21 was nominated and shortlisted for the EDA Awards (European Diversity Award) Community project of the year and in 2016 granted Charity status.

In 2017, Positive21 was once again been nominated for the (European Diversity Award) Community project of the year & Charity of the year.

Thank you for taking the time to read about my personal journey and of the creation of Positive21.

This has been dedicated to honour, and in memory of, our loved ones, friends & families whose lives were so cruelly taken by the HIV/AIDS epidemic; and also, to give thanks and acknowledgement to all those who willingly gave themselves, both past and present, in partaking in medical trials that has paved the way forward in the development of further ARV combination medical treatments.

Michael Avloitos

Founder & CEO
    © 2012-21 by Positive21. All rights reserved. Registered Charity: 1166143.