Positive 21 - Challenging HIV in the 21st century

Positive 21 - A peer support group for gay, bisexual & MSM men living with HIV

 

What our members say

The flowing testimonials have been written by a handful of Positive21 group members. Appreciation and thanks go to the members who wanted to share their experiences in this way and to all the Positive21 group members who endorse these testimonials.
 

'It is showing that you are positive'

These were the words of the nurse that diagnosed me HIV+ on the 15th December 2015. These 7 words are embedded in my mind, my heart and my soul and will be forever.

My immediate thought on that day was 'What is my son going to think of me? He's going to think that his Dad firstly leaves me, secondly divorce's my Mom, thirdly comes out as gay and lastly now becomes infected with HIV? '

I went through the motions.

To the Queen Victoria Hospital the very next day. A full sexual health assessment. Questions. More questions. Evasive questions. Uncertainty stormed in my mind. Confusion. So completely scared. Petrified that I was going to be precisely, completely and utterly following in the shoes of the Oscar award winning actor, Tom Hanks in the movie Philadelphia. I was going to die just as Andrew Beckett did in the movie.

The days and weeks that followed encompassed more consultant's appointments, nurse's appointments, blood tests, an intense weekly psychologist's appointment that lasted 2 months, an MRI scan..........feeling so sick and weak that from one moment to the next, I had to go from an ordinary sitting position on the couch to suddenly having to lie down. Every molecule of power and energy in my body vanished almost instantaneously and brought on a forced sleep.

I could feel my ARV's working in my body, flowing through my veins. I know now that this is when I was seroconverting.

I started taking my medication within 3 weeks of my diagnosis. I had really painful muscular side effects. However, the most difficult part was my mental health. Even after being told that I was undetectable, my mind continued to race at 200 km/hr. It raced at such a speed and in so many directions that the destination I was racing towards never appeared.

And then Michael Avloitos of Positive 21 arrived on the 20th January 2016.

I have told Michael this many times before and I will say it again. Michael was appointed by God himself to do the work that he does today.

Michael's life is Positive21. His concern is not for Positive21's new charity registration number nor the 2017 nomination for the 2017 European Diversity Awards. Michael's goal in life is to help and prepare for us to make HIV+ gay men feel better about themselves, feel good again, feel strong and feel divine.

Today, now, as I type these words for you the reader, I feel worldly better, stronger and more confident than even years before I was diagnosed.

I have grown to know, learn and understand that the journey that I have been on has been an extremely bumpy one. I have now accepted it and live my life knowing that I am ok.

My son is ok.
My family is ok with me.
I am one of many Gay HIV+ Dads.
My fellow Positive21 brothers are also ok.

Yes, we have our wobbly days now and again. Why you ask? Because we are the same people that we were before our diagnosis.

Tuesday evenings at our meetings makes it ok.

For me, it is about telling our group about me and how my week has been. It is the greatest healer of all, above any antidepressant medication / psychologist's appointment / health questionnaire. I feel happy, comfortable and calm in hearing about their past week and their inner most feelings. I come away from every meeting having learnt something new and knowing that I am not alone.

I am a great advocate of Laughter being the Best Medicine. There have been moments during our meetings that I have laughed so hard that I have almost fallen off my chair and choked on a grape :-))

Thank you to our facilitators who give of their own time to help steer Positive21,
And thank you to the people that assist Michael in managing Positive21's charity structure behind the scenes, the special people that we see only once a year.

Thank you also to Pride in London. You've made me worldly stronger in the last 2 years.

And lastly, thank you Michael Avloitos for being you and for graciously accepting what you do.
You defend us. You care for us and you honour the other gay men that are no longer with us. Know that they are all around us and shine on us too through the work you do.

If you are reading this and are newly diagnosed, talk to Michael. Positive21 will change your life.

It changed mine.

HR

When I was diagnosed HIV+ in Aug of 2015 aspects of my perceived certainty in my world imploded. By a lucky coincidence a friend knew someone who was associated with Positive21 and that was how I got in touch with Michael and the group as I had not come across them before. Receiving the news that you are HIV+ puts you on a steep learning curve in how to mentally cope and also how to manage your condition and Michael and the group were instrumental in helping me navigate this new journey. Michael accompanied me to the clinic where I am registered to help me cope with my first HIV medication appointment. At that appointment your medication regimen is discussed and Michael's presence with me was crucial because all the information was just washing over me and not much was being retained by myself at that time. I trusted Michael and he understood my anxiety and a good choice in medication was made. Being involved in the selection is an important part of the coping process.

Over the past 4 months that I have been with Positive21 I have absorbed and retained the necessary information to manage HIV with the help of the support group. I started my medication in early September and have been a frequent attendee at the group's weekly meeting as that was a key element in my ability to successfully adapt to my new condition as a person living with HIV. Having started the medication I quickly became undetectable, my CD4 count continues to improve and by the end of December I have been deemed stable by the clinic such that my appointments are now set at 2 or 3 times a year. This rapid progression from personal catastrophe to medical stability and psychological calm could not have been achieved without the critical support of Michael and the Positive21 support group. The support group's influence has been so life affirming and important to me that I want to continue attending the weekly meeting. They are a wonderful diverse group of individuals. Everyone contributes something to each meeting. Positive21 is an important partner on my new life path.

HR

"Since my diagnosis on the 29th May 2014 my journey has been no different to those that have come before me however, knowing of positive21 for some time before my diagnosis there was only one point of contact to gain support. Knowing of peer support groups was a great help however, it's no easier coming to terms with a life changing situation as being diagnosed as HIV+. On the evening of the 29th May 2014 I called Michael to have a social chat and asked questions about his support group. This discussion was one of the hardest I have ever had in my entire life due to the nature of the discussion.

After the very long, long discussion I met with Michael in the next few days, and since then I have attended some of the group sessions. I live in the Brighton area, you may ask why come all the way to London when Brighton has great support services??

What Positive 21 (Michael) offers is a unique service unrivalled by others I have worked with or attended in the past, I have worked in the Therapeutic area of HIV for many years so I know a lot through my profession.

Michael applies a very unique style when engaging with his members (Boyz as he refers to them from time to time) it is a tailored service and is very individual. What Positive 21 (Michael) has brought to my life is priceless and no amount of money could buy what he offers.

I cannot recommend or praise the work done and achieved by Positive 21 (Michael) and all done for the love and greater good and all at Michael's expense both emotionally and financially.

Please support Michael in this great quest so more Boyz can live a full and exciting life as I do through the support of Michael (Positive 21)"

HR

I have been living with HIV for over 10 years, and I am glad to say that for the most part life goes along fairly smoothly. I have been taking antiretroviral medication (meds) from the outset because I was late diagnosed but I am fortune that the meds have kept me well without too many side effects. However, I do feel as a positive gay man that it's sometimes hard for negative friends to understand some of the emotional and psychological challenges of living with a long-term condition, and keeping concerns and issues internalised is not good for anyone's wellbeing and can cause stress and anxiety.

I heard about Positive 21 from a close friend. He told me since joining the group it had become a highlight of his week because it provided a confidential, open and friendly setting to share information, discuss concerns, meet new people and offer peer support. Although I have a good network of close friends, I had been feeling rather socially isolated and lacked an outlet to raise and discuss HIV issues of concern. My friend contacted the group facilitator who called me and we had a brief conversation in which he explained how things were organised, the services offered and I explained my motivation for joining.

Since joining the group I have tried to attend at least twice a month. I have found it a very supportive, friendly and sharing environment where we can all express our feelings, and share and receive support regarding the challenges we have been facing. The group is always facilitated in an inclusive, caring and informative manner giving all those attending an opportunity to raise issues of concern, receive input from facilitator and participants, and socialise in an open and relaxed environment. Guest speakers are organised on a fairly regular basis. I found a treatment update from I-Base very helpful because it helped me consider alternative fixed dose combinations taking into account new HIV treatment guidelines. I am as a result transitioning away from Atripla which is no longer recommended as first line therapy to Triumeq.

Positive 21 provides a supportive environment for gay men whether they are first diagnosed or living with HIV for some time. I would definitely recommend it as a safe and caring space for men wanting the support of other positive guys.

HR

"I was diagnosed HIV positive September 2007 at the age of 22. My partner at the time infected me and we stayed together for several years and even got married. We separated a year ago and I found myself alone and for the first time really having to deal with being HIV positive. I did not know anyone else who had HIV and coming out of a long term relationship I had concerns about how I would be able to meet new people and discuss my diagnosis with them, I was also depressed and felt isolated from other gay people because of my condition. I found out about Positive 21 through my local GUM clinic and I contacted Michael the facilitator who discussed with me my expectations of the group and whether it would be beneficial to me. I have been attending meetings now for around 4 months and I can honestly say it has been a life changing experience.

I now have a group of friends who I can turn to who are positive like me. I no longer feel isolated and I know now that being positive does not mean a life of loneliness. The group enables me to share my thoughts and feelings in a safe environment with people who care. I have learned so much from the other HIV positive members as we discuss our experiences which I have applied in my day to day life. As a group we all try to help each other with whatever problems we may be facing and there is no pressure in the group even if some of us do not have much to say at all. On occasion we have guest speakers who come to share information about treatments and other conditions that come with being HIV positive which I have found very informative and useful. I enjoy attending the positive 21 meetings and if you are in any doubt or unsure if this group is for you please give Michael the facilitator of Positive 21 a call. Michael is one of the nicest souls I have ever met and just wants to help HIV positive gay men feel happier and more knowledgeable about their condition. I no longer have to deal with being positive alone anymore and it is all thanks to Michael and Positive 21."

HR

"I have been a member of Positive21 for just under a year and have found it to be extremely beneficial for me. The weekly meetings are conducted in a very friendly, confidential and non judgemental atmosphere where I have become a part of a family rather than just friends or acquaintances. I appreciate your offer of help and support during and as well as outside of these meeting hours. I find the meetings very special as I can be myself there and open up as much, or as little, as I want to. The meetings not only give emotional support when needed but also lots of important information on how to cope with all the issues that our status bring up - namely health, medication, emotional, financial, sexual, recreational, relationships etc etc.

I only wish that I had known of Positive21 in my early days of diagnosis when I was in most need of such help, information and support.

Thank you for all your good and hard work in making Positive21 the success that it is."

HR

"This is my 23rd day of knowing that I am HIV positive (I was diagnosed on the 26th February 2014 and I was infected on the 8th September 2013).

I would have staked my life that this couldn't EVER happen to me because of the extreme fear I had of HIV and always being so protective over my sexual health.

It HAS happened to me ... and even though It remains like some surreal nightmare at times, meeting Michael the facilitator and creator of Positive 21 and the members who attend group and feeling their open hearted compassion, care and warmth, has given me comfort at this sad time and very painful point in my life.

Michael has been so incredibly supportive and caring at a time when I need someone to simply trust and say to me it will be all right in the end.

I did and do trust this group of strangers who have offered me the warmth of human kindness ... and hopefully one day soon I'll be strong enough to offer the same comforting support to others who walk through the door of Positive 21, because it's an important part of being human.

My heartfelt thanks for all you have done for me Michael and to the other members of the group for just being themselves."

HR

''I have been attending the group for a number of months and have always found it to be a welcoming space to be. The facilitator Michael is warm, friendly and very supportive. I feel that the group is a very important space to discuss issues and share thoughts and feelings to solve problems or merely as a social forum.

I do hope that it not only continues but goes from strength to strength as I feel that it is a much needed support group for +ve gay men.''

HR

"I was diagnosed HIV+ in May 1987, a month after my 22nd birthday, and was told that the longest I could live would be 5 years if my luck held out. Well, I'm 48 now, so obviously my luck did hold out! Until recently I've been very lucky indeed with my health. I chose a healthy lifestyle and cut down on the late nights and clubbing in the last 10 years but unfortunately in the last two years I have developed serious mobility problems due to Avascular Necrosis developing in my hip joint, possibly caused by either my medication or the HIV itself.

A chance meeting at the gym with Michael, the facilitator of Positive21, brought the group to my attention. I was sceptical at first as my previous experience with HIV groups had not been entirely positive. I'd generally found them to be unfriendly, cliquey and a little intimidating — not what you need when you're feeling isolated and vulnerable! So, I struggled along with support from family and friends but wished I could have peer support from other positive people.

My experience with Positive21 was totally different to other support groups right from the beginning. The atmosphere is friendly and warm without being overwhelming; the people are genuine in their support, and in a short time I felt I'd made friends with people who understood and cared about my issues as a positive gay man. There is no hierarchy at this group; the facilitators leave their ego's at home and your issues get the attention they deserve. Everyone gets time to share, if that's what you feel you need.

I look forward to the group meetings. The feeling of belonging to a genuinely supportive group has improved the quality of my life as a positive person; the isolation I had grown used to is a thing of the past and the group provides peer support for as long and as often as you need it."

HR

"I have been attending the Positive 21 HIV support group now for 7 months and it has proved to be an invaluable peer support group that has enhanced my life in several ways. This space offers the opportunity to give and receive support in a relaxed and non-judgemental atmosphere.

The empathy shown by facilitators and group members has greatly alleviated for me and others the loneliness and social isolation which all too often accompany a HIV diagnosis. Guest speakers and experts are carefully selected to educate group members on a wide range of health related matters. The Group is a valuable health promotion resource in empowering us to better manage our own conditions and to educate us regarding better mental and physical health maintenance.

Unlike other larger groups the Positive 21 Group is smaller in size and makes this is a more inclusive and intimate space which allows each member to speak openly and to be heard. The facilitation of the Group is highly skilled, professional and impartial.

The location at the GMFA headquarters has been excellent and accessible and I am confident that the new premises at the Mildmay will be just as successful. As a nurse working in the NHS affected by HIV I can highly recommend the Positive 21 Group to any prospective user. Long may the Group's good work continue."

HR
"Since the onset of HIV & Aids there have been a number of organisations run entirely by volunteers who formed weekly peer support groups, and as time progressed, more groups appeared, all of which offered various services to diagnosed people.

The purpose of these groups was to create a place where people could feel supported and could speak openly and freely about their status.

As a complimentary therapist I encountered many, many experiences over the years working with people who shared with me their feelings and thoughts regarding their status and found that through their stories it had somehow prepared me for the possibility of my becoming HIV + one day in the future. I was diagnosed in 1995.

After taking some time out, to absorb the news of my diagnosis, I found myself getting involved with various HIV organisations that helped me to develop a better understanding of HIV. More often than not, I found myself isolated and wanted to be around others like me where I could share my experiences with both newly diagnosed and long term. Therefore I attended the peer support groups available back then. Over time when I felt my confidence had grown I began to feel less isolated and found I was able to move on with life and my visits to the groups lessened when I met my partner.

Sadly, most peer support groups that once were have now gone. Only a few have survived and those few, have changed dramatically. After some years of getting on with and dealing with my life changing experience, I began to once again feel isolated and felt I needed to seek peer support again. Remembering that there were a few remaining groups from the past I decide to attend. After some months of attending these groups, I found myself going less often until I stopped going altogeather. There was no longer the freedom of space to discuss individual, personal issues and these groups now lacked any presence of peer support. I feared , that I wouldn't find what once was peer support from a group, because it seemed to no longer exist, it was something that was now long gone, a once upon a time story.

Until now...

I was made aware of the positive21 group by a friend and decided to take a look at the website, I was amazed at what I was looking at and reading, especially the testimonials of the people who attend this group, I empathised completely with all these men's feelings and their experiences. Based on their testimonials alone, I wanted to be a part of this group and so made contact and met with the group's Leader Michael.

On meeting with Michael, I found myself at complete at ease, speaking freely with him and feeling very reassured on what he had to say about positive21. There was no doubt in my mind that this group was going to be right for me and looked forward to attending and meeting the other people.

At the end of my first meeting I left feeling uplifted, smiling and relieved, I can honestly say that I have found a peer support group that works for me, that has clear aims and objectives and is within a safe and confidential environment. This group is what peer support is meant to be all about!

Michael just inspires the entire group. He supports everyone and is a great leader, who is respected, appreciated and liked by everyone at the group. People do speak openly and freely with confidence and share their personal issues and experiences without fear of being judged and people are supportive to one another with complete respect for confidentiality.

Joining this group has been an amazing experience for me I'm so glad to be a part of this group, I would recommend this group to anyone who wants to change living in isolation with HIV and is seeking peer support."

HR
"Positive 21 is one of a number of groups I have attended since being diagnosed in 2003. What makes Positive 21 different for me, is that it is truly a peer environment, with everyone having equal rights. All the participants contribute to the conversation and I really like how relaxed and supportive the group is. I feel like I have learned a lot from the other members and the guest speakers. Michael is a great facilitator - allowing everyone the space to share and contribute."
HR

"My HIV diagnosis came as a complete and utter shock to me in the summer of 2011. Like many who are greeted by this news, it's not an easy thing to digest; I attended counseling, workshops and support groups for HIV gay men but none seemed to offer me the insight and relaxed setting I needed to explore my HIV status.

The name Positive 21 appealed at once as an idea that is forward looking - and so this has been proved. This is a group that deals with up-to-date issues surrounding HIV and doesn't merely reflect the past experiences of its members or indeed HIV. Whether it's looking at the emotional fallout of HIV, the practicalities of medication or coming to terms with the status, this group offers support in a way that is accessible to us all. Michael's knowledge in this field and his sensitivity to the issues involved ensures this safe environment is a place where I feel comfortable about discussing what are sometimes intensely personal issues.

I should say that Positive21 is characterised by a real concern for the welfare of all its members and that a balanced approach between serious and lighthearted moments makes the group a place where HIV men can work through their concerns in a non-threatening, welcoming environment."

HR

"As a regular attendee of the Positive21 group over the past year, I have encountered a refreshingly open and tolerant atmosphere. Through care and sensitive facilitation, members are able to share their thoughts and ideas in a non-judgmental environment. The group has an upbeat dynamic; members are valued as individuals and therefore feel comfortable to speak freely in total confidence. The focus in the group is on the person and the provision of meaningful peer-to-peer support. In addition to being a shared discussion forum, there are a wide variety of key speakers invited to present on all aspects of living with HIV, ranging from the medical to mental and physical considerations. I find this holistic approach both very effective and enjoyable. The group is open, honest and respectful – it has added great value to my life as a positive man and has increased my knowledge, understanding and self-confidence in living with HIV immeasurably."

HR

"I have been attending Positive21 since it was created. I was not quite sure about what to expect other than a meeting place to meet with other gay or bi sexual men living with HIV and to share experiences about how HIV may affect our daily lives.

The evening opens with an opportunity for everyone say hello and to raise any HIV related matters that concern them. Topics might be related to a particular health problem, difficulties to reconcile work and HIV, starting medication, disclosure or isolation. All this is done in a safe, relaxed atmosphere and without any fears or worries of being judged and the group is peer lead, guided and fully supported by Michael the facilitator.

During coffee break, everyone takes the opportunity to catch up with one another and welcome all new members who've just joined Positive21. It also gives time for people to further explore some of the matters raised during the first session, be it personal or general issues. After the break, discussions continue on issues / particular themes touched upon during the first half of the meeting. Everybody is free to engage and share personal experiences within the group to which we all offer suggestions to one another on how to deal with various or particular problems / concerns related to HIV. It is also an excellent forum to socialise and meet new friends without being put off by the challenges of disclosure.

I have and continue too, thoroughly enjoy attending Positive21, I'd recommend this group to anyone who wishes to change living in isolation with HIV, for anyone who is willing to gain more information about how HIV that can be dealt with on a daily basis and who is also willing to gain some practical and psychological support from other gay men living with the same condition, or, if your just seeking to be with other people alike within a safe environment and an efficiently managed peer support group."

HR

"I was feeling lonely, isolated & after trying for many years to try & make friends with other HIV+ guys online, what I was experiencing was people who were only interested in some other forms of social interactions. I received an email about the Positive 21 group in a mail out by, PACE, at first like others initially I was doubtful about Positive 21, but since I had made it my New Years Resolution to meet more people, I decided to e-mail the group facilitator Michael and make further inquires by asking him what the group was about. I expressed my concerns and worries as I had been to a few groups in the past and found them to be too big, which left me feeling that not enough time was given to discuss all you wanted / needed too. Also the great majority of people in one group seemed stuck / trapped in thinking they were victims & moaning about how life had dealt them the short straw, unfriendly, cliquey & lacking in firm boundaries that are crucial for people to feel safe in a space to openly talk about their lives. This is what I had experienced in other groups for which nothing was done, simply because they were user led & anything was up to the discretion of the facilitators, who were not bound by anyone.

Michael reassured me with the feeling that his group was not looking to imitate others but stand out alone in being progressive & forward looking, which made me curious and wanted to come along to see for myself and find out more. On my initial visit Michael came to greet and meet with me outside the building (in the snow!) and brought me inside where we chatted over some tea. He explained how the group came about & what was hoped to be achieved for the participants and I was shown a list of rules / code of conduct for the group, that I agreed with and also had to sign a confidentiality agreement before I could join the group, which made me feel more confident in attending as it was becoming clearer that there was something different about this group and its structure. The ground rules /code of conduct are on display at every meeting for everyone to see The group is run by and peer lead by Michael and is hosted by the GMFA at their offices, so there is a safety net of a professional organisation behind the group which means complete confidentiality for the participants and the knowledge that if there are any issues then it would be dealt with in a swift & professional manner, ultimately, being subject to Positive21 & GMFA regulations. I have not come across or been to a group like Positive21in a long time, its refreshing to be there and continues too with each visit and importantly for me I feel safe there in the space with others alike. I enjoy coming to this group as it makes me feel comfortable & despite what could be discussed, I have never felt dragged down by anything; and if I was, then I know that there will always be someone in the group, if not Michael, to be able to alleviate my worries with. All the group members are friendly, talkative, and supportive & have a wide variety of life experiences. I was fortunate enough to go to the 'Xmas' Dinner (in Jan!) where I was able to meet more of the group in an even more informal setting. They are all lovely genuine people all with whom I am at ease with and with no hints of any cliques or attitude.

The group members are from a diversity of backgrounds with a wide age range, thou I am the youngest, the participants are all open minded, understanding, respectful, down to earth people who are there because they want to be and can have a laugh, despite what other issues may be going on for them. The discussions themselves are very informative, either going round in a circle to catch up & pick up on common themes, and sometimes having regular guest speakers on various topics that are all relevant to PLWHIV such as Dr's, therapists, clinical nurses / benefit advisors etc.

I feel the group offers me understanding, experience, a road out of isolation, old fashioned interaction with human beings & support if I need it; Michael goes out of his way to offer to visit/take people to hospitals if they are ill/feel they could do with the company or even a coffee during the week to help with isolation; something very unique, thoughtful & special for anyone to do in the modern culture of self-centeredness & self-gratification we live in.

For years, I was simply looking to connect with HIV + guys who were able to talk comfortably about what it means to be HIV+, how far we have come, the stigma we still face from both the gay & wider communities as a whole & at the same time being able to make a consistent, genuine & supportive network. This was possible a few years ago with what was the original and respected groups and sadly since they are no longer I had been struggling to find any support anywhere especially from other HIV+ guys online who do not appear to be interested in any other interaction except alternative social interactions. Fortunately, Positve21 group now exists to fill that space with a focus on supporting it's members with the new challenges that HIV poses for us 30yrs on, in a time of NHS/benefit changes, newer, potent, easier to take & well tolerated medications & a shifted view of HIV now classed as a 'chronic' condition rather than the death sentence it was, once upon a time.

© 2012-17 by Positive 21. All rights reserved. Registered Charity: 1166143.
 
© 2012-17 by Positive 21. All rights reserved.