What do you want from HIV Partners in 2016?

What do you want from HIV Partners in 2016?

Hello everyone,

I thought I had replied to Mal69's post about "This Site" but it looks like I lost the post in the either, I also thought most of my unseen reply applied to everyone...

Firstly, thanks Mal for your kind words and to everyone who has said how helpful they have found the community.

I also wanted to check that you have all visited the web site I built to support this project, if you haven't please visit the site at hiv.partners the site has a lot of information and resources which, I hope, helps us all living our lives with HIV.

Secondly, I wanted to ask you all, how would you like to see the HIV Partners web site develop in the future?

Mel made a very valid point when he suggested some sort of get-to-getter there are time when it is just 'nice' to be with other people who are also living with HIV. Not with any particular agenda or endless chatting about the virus but just being with other positive folks who are not going to judge or condemn us for living with a simple virus.

I also noticed a few personal adds being posted. I thing this is great and very natural and something I am very willing to support and develop in the future. I think reading between the lines that the HealthUnlocked team might be less enthusiastic. Given that I would be very happy to bring that aspect under the HIV Partners web site.

Would you find it useful if I developed some bulletin boards on the HIV Partners web site? I could set up some regional boards for everyone so they can develop stronger bonds with other people living locally

with HIV .

Let me know your thoughts, you can post your suggestions here or if you would rather message me directly you can email me on paul.decle@hiv.partners

Finally, can I ask you to edit you profiles to add the country you are living in? This is important because there are different test and treatments available in different parts of the world. It helps to know where you are when we give advice to each other.

That is it for now.

Wishing you all the very best in the coming year.

With the kindest regards,

Paul.

PS. Fifty Four years ago my mum took this picture of me and my dad

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  • Hi Pauldecle, thats a lovely picture and a great post.

    I dont know when this site started but in the two weeks that i have joined, i have actually felt psychologically supported by the encouraging words or sincere frustration posted by other people like me.

    It would be nice to get to know other people not just via their post as suggested by Mal69. But the question is; how many people are confident enogh to show up to an outing with other hiv people? Are majority of us still not fighting the personal demon of stigmatisation and low self esteem like me?

    Looking past all these, i am looking forward to meeting other people living with this virus and conquering it.

    In 2016, i hope to join a forum where people who lives nearby each other or willing to travel, can go for a drink, talk about other aspect of life outside hiv, form healthy friendly relationship without fear of being judged, go on holiday like Mal69 said and actually begin to live, having a common family of sincerity and acceptance.

    I am up for any ideas on how this can materialise.

    Have yourselves a glorious new year.

  • Dear Poorly,

    I first started talking to the HealthUnlocked team about developing this community for people living with HIV early in the summer of this closing year. I wanted to create a space for people where we can ask questions, get support and information we need to live long and happy lives after diagnoses.

    I did not know what to expect and I did not want to be too controlling thinking of it more as our community not my project. I did want to try to reach a mix of newly diagnosed and people how have been living well with HIV for some time.

    Confidence in meeting other people and talking about HIV comes with time so please just be kind to yourself and give yourself the time you need. I am glad you are planning to join some positive groups in 2016, if you let me know where you are I will see what there is in your region, if you would rather let me know privately you can email me at paul.decle@hiv.partners

    I truly believe we can support each other and I am proud to be part of this growing community.

    Poorly, I will talk to you more by replying to you other post.

    As Always,

    Paul

  • Sounds very good I would love to come out meet people just chat laugh and make friends

  • I want HIV Charities to focus on tackling stigma and people how effective treatment is... I don't know what these charities have been doing for 20 years but for me they are lagging way behind and certainly aint help me who suffers from the Stigma regular all because I was honest enough to be upfront about my status.. I totally regret being upfront about my status because of the gossips and the terrible stigma surrounding it.

    I want HIV charities to stop focusing on prevention and promote facts about risks of contracting HIV from a person on meds and undetetchable.

    Much much more needs to be done to tackle this Stigma because I cant bare it.

    Happy New Year too x

  • Hi John,

    I sympathise with many of the sentiments your make in your post.

    Stigma: This is just such a big problem for many people living with HIV. The problem is also influenced by many factors such as where one lives, religion, cultural background and sexuality.

    Charities can only do so much the rest is down to us as individuals. I see more than a few parallels in the stigma and discrimination people living with HIV face as the GAY community faced throughout the last century.

    I think it will also take just as long and need as much effort for the HIV positive community to reach the levels of acceptance that the GAY community have now and lets face it that level of acceptance still varies in different parts of the UK let lone the world.

    I also agree that there is not enough promotion given to the fact that after six months of being undetectable on treatment, we cannot pass the virus on to others.

    I work for two days a week as a peer support worker in one of the major treatment centres in London and I am amazed just how many patients I see, who have been undetectable for years, still have no idea that they cannot pass HIV on to their partners.

    I cannot tell you what to do and I do not know where you are or what your circumstances are but... Have you thought about getting more involved in advocacy or activism?

    We, as positive people, can talk for ourselves ;-)

    Now, it is New Year's Eve, all is well in my little world, I am going to open a very nice bottle that I got for Christmas and start to welcome in 2016.

    Wishing you and very one else all the very best for 2016 and many years to come

    Lots of love,

    Paul.

  • Hi Paul,I'm Neil from the uk,been diagnosed just over a year and had a tough old time so far but am doing everything I can to get on track and start living again.

    This site is an excellent idea and I particularly think that the idea of getting together with others for a realtime meet is a good one,I'm not sure how that would work with people from all over the globe but maybe in time if we make sure the site is marketed well enough then we will see the members increase to a level whereby it's possible to have people in each country and maybe one day in each district that can coordinate this.

    I feel a real need to connect with others that understand and have thief own journeys and not just to offload to each other but to feel part of the bigger picture as often it's all way to easy to feel isolated and alone when in actual fact there are millions of people worldwide who feel the same.

    Great work on the site,maybe a tester could be a group Skype chat one day to kickstart a few ideas for you,I don't know but keep up the good work.

    Regards

    Neil

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