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HIV Life >> I Just Tested Positive

taurusthecat
Master

Reged: 11/02/06
Posts: 131
Loc: Melbourne, Australia
Re: Professional in NY feeling alone
      09/10/08 10:51 PM

Hi Phoenix, I'm in Australia and would like to offer input to you about my own personal experience with HIV support groups. I was diagnosed in 1999 and was at the time working fulltime for a govt agency in admin, renting a house on my own and trying to make ends meet. I was quite a fit person and had carried around herpes since the age of 16 (was 36 at the time of my hiv diagnosis and treated for the herpes with ongoing daily acyclovir for over 8 years) and hepC since I was about 22, undetectable in my system, but still a worry. I add these 2 things to this post because at the time of my hiv diagnosis I had already carried around permanent viral hitchhikers for most of my adult life and was used to the idea of having something I could never be rid of and to some extent had come to peace with the notion; "you don't hurt me you may as well come along for the ride, what choice do I have anyway?". So while I did suffer strong depression and problems emotionally dealing with the diagnosis in 1999 to begin with, underneath it all I had a starting point that life had to go on, it was just a virus after all, and I would just get on with life as best I could.

I continued working at my job for 2 years and told no-one there about my status, like herpes etc I didn't think it was anyone's business and didn't affect who I was or what I had to offer in day to day life. I never defined myself by my hiv, it was just an intrusion, and like the herpes, I never blamed myself and felt guilt, it was just an unfortunate medical situation I was forced to deal with.

Sometime around 2001 I became ill and developed pneumonia, it started as a bad cold, I took a few days of work thinking I would just get over it and ended-up lying in bed with no-one knowing how sick I was and nearly died. By a sheer chance a guy who I had met randomly a couple of months earlier phoned me out of the blue to say hi and when he found out I was so sick he came over, made me something to eat and called my doctor who came to my house and told me I had to go straight to hospital. I'd been keeping to myself and just working and not socialising so normally I wasn't called by anyone, they waited for me to call them. Having someone call when I was in this state was so extraordinary, and I was so ill that I could hardly speak, let alone get out of bed. I'd managed to stagger to my cell phone and it was on my pillow next to me, in my delirium I had managed to somehow force myself through the pain to move myself out of the bed and find the phone and bring it back to bed, but not have enough strength to call anyone, just lay there sweating in excruciating pain and slowly fade away. I was sent to hospital for several weeks and got better in the end. I have related this here because at the time I was pretty isolated (my choice) but the fright of being alone and nearly dying in bed (my first ever experience with anything related to my hiv and worsened immune system) made me re-evaluate my living situation. I came up with the idea that maybe I should try to find a large rental house, advertise for other hiv people and form a sort of commune in it, if there were enough people we could easily afford the rent and in times of illness such as I had just gone through, there would likely be someone there to bring you hot soup, phone your employer, hold your hand and generally be supportive, and in times of health you would be an understanding person who knew what they were going through and do the same for them. In my head it seemed like a great idea.

I had never visited any sort of hiv support group to that time, as I said I had just gone on with life and treated the hiv as an inconvenience, so had absolutely no experience with anyone else having hiv on a scale like a support group, where this is a massed group of people all with the condition in the one place. Deciding to advertise for other hiv people to organise a houseshare, I put up a notice in the drop-in centre in my city and waited for responses. Well I did get responses, I had chosen the drop-in hiv centre because it was the one and only place where hiv pos guys went and were all in the one spot. But after never having known more than the odd person here or there with hiv socially, I was suddenly faced with many at once and I am sorry to say I was not impressed. I had a guy move into my house who was in 'desperate need' of somewhere to live straight away, we decided that we would organise the new house together. He left without notice after only 3 weeks for no reason, he went to a new houseshare closer to the city paying no security or bills and owing rent I had counted on in my personal budget. Another guy from the drop-in centre who had contacted me earlier and then decided he didn't want to live in my area miraculously got back in touch with me the same week the first guy moved out and I was in a panic, at the time I didn't realise it, but he knew the first guy. He moved in and brought with him 2 friends who were also hiv to help him move in, one of them took a shine to me and we became briefly close, he had major personal issues and wanted to move in as well. I was just made redundant from my job and was out of work and now had no income, this new guy did roofing and told me I could work with him and everything would be fine but when I told the first guy this he moved out without notice, they all disappeared from my life and 2 days later I phoned the second guy to talk with him to try to find out what had happened and all three of them were laughing and joking at a dinner party at the roofing guy's flat, I could hear the first guy's voice in the background. I never saw any of them again. I could not find work, became depressed ended-up homeless. I phoned a friend who was hiv I had known for a few years and stayed on his living room floor, he had another guy I had met socially a while before homeless and staying with him as well, also hiv. We decided to find a place to rent together. We found a place, moved in after much searching and hard work to find the place, I spent the first week away at a friends visiting and when I returned home found the guy had left all his bags of stuff and just disappeared lumping me with the lease and bills and no housemate. He never returned for his things and though I knew he visited this hiv drop-in centre and left him notes asking him to at least let me know what was going on and to bring back his keys, he never contacted me or came back for his things in the next 2 years.

While I cannot generalise on mass groups of people with hiv and how they behave, I can relate this story of my own experience when faced with trying to make a normal life for myself and having a lot of people with the condition come into my life at the one time. They were all flaky, irresponsible, and jealous that I did not see myself as a victim or identify primarily as a person with hiv.

A couple of years later I moved into a government supported unit of my own and utilised the services of the hiv centre for financial assistance to purchase a new refrigerator and washing machine, they were wonderful and the support system from them was great, I have nothing but wonderful things to say about them. But the many people all flocking to the centre I found to be bad to be around, they were people who had unhealthy lifestyles, identified too much with the virus, could not seem to understand that someone wanted to make their lives better and that their life was not over just through having hiv and when faced with me who was not like them, they almost actively tried to destroy things for me, sort of saying in a way "who does he think he is! He thinks he's so much better than we are!" when all I was trying to do was have a good life, improve my situation and get on with working and enjoying life.

This will not be everyone's experience of course, I know that, but it was mine and I would say to you Phoenix, that if you feel like you don't just automatically gel with groups of hiv people and support centres, it might be a mistake to give yourself a hard time over it, it may be that like myself and probably many others, you are not someone who is personally defined by your condition and they are. If you feel no connection to most other hiv people in your area please don't give yourself a hard time, think of my story here and thank your lucky stars that you are probably just not on their wavelength mentally and that by virtue of your differences you will be allowed to get on with creating a happy, successful and peaceful life without jealous and unhealthy interference.

Many people who are diagnosed hiv use the condition to identify with and define who they are. They use it as an excuse to do nothing with their lives, have even more unprotected sex, take more drugs and when they come across someone who is not like this they can sometimes lash out and try to spoil things for that person. Be thankful that you are not among that number and stop thinking you are being a snob. You are who you are and your hiv has not changed your personality in anyway, there is no law which says you HAVE to associate with others with the same medical condition, I found out myself that this sometimes does not work at all and depending on your life-goals, mental makeup and attitude to your hiv, it's sometimes better to avoid others with hiv in your local area altogether.

Taurusthecat

--------------------
I'm like fake fruit...... I don't bruise that easy.

Post Extras: Remind Me!     Notify Moderator

Entire thread
Subject Posted by Posted on
* Professional in NY feeling alone Phoenix1012 09/08/08 08:10 AM
. * Re: I'm a Professional in NY feeling alone onekingdom   12/07/08 08:21 PM
. * Re: Professional in NY feeling alone wpk7275   10/19/08 09:55 PM
. * Re: Professional in NY feeling alone gurlzone   09/19/08 01:14 PM
. * Re: Professional in NY feeling alone Phoenix1012   09/22/08 07:54 AM
. * Re: Professional in NY feeling alone ws2toronto   09/19/08 06:00 PM
. * Re: Professional in NY feeling alone ws2toronto   09/17/08 11:36 PM
. * Re: Professional in NY feeling alone Phoenix1012   09/22/08 07:58 AM
. * Re: Professional in NY feeling alone ws2toronto   09/24/08 07:09 PM
. * Re: Professional in NY feeling alone Phoenix1012   09/24/08 09:55 PM
. * Re: Professional in NY feeling alone taurusthecat   09/22/08 10:14 AM
. * Re: Professional in NY feeling alone Richard3910   09/15/08 09:23 PM
. * Re: Professional in NY feeling alone ANewMe27   09/14/08 08:30 PM
. * Re: Professional in NY feeling alone livinghope   09/14/08 05:44 AM
. * Re: Professional in NY feeling alone Phoenix1012   09/13/08 09:46 AM
. * Re: Professional in NY feeling alone TdavisMSW   09/13/08 07:20 PM
. * Re: Professional in NY feeling alone morethanpoz   09/12/08 10:34 AM
. * Re: Professional in NY feeling alone sbev1981   03/20/09 07:00 PM
. * Re: Professional in NY feeling alone Seekyah   09/17/08 02:03 AM
. * Re: Professional in NY feeling alone Seekyah   09/17/08 02:00 AM
. * Re: Professional in NY feeling alone TdavisMSW   09/13/08 06:29 PM
. * Re: Professional in NY feeling alone Ophites   09/11/08 10:50 PM
. * Re: Professional in NY feeling alone jnm83   09/11/08 06:40 PM
. * Re: Professional in NY feeling alone michaelmca   09/11/08 05:56 PM
. * Re: Professional in NY feeling alone charlespitre   09/11/08 09:36 AM
. * Re: Professional in NY feeling alone maxx   09/11/08 08:14 AM
. * Re: Professional in NY feeling alone taurusthecat   09/10/08 10:51 PM
. * Re: Professional in NY feeling alone TdavisMSW   09/10/08 09:11 PM
. * Re: Professional in NY feeling alone NYRN   09/10/08 09:05 PM
. * Re: Professional in NY feeling alone toothsaver   09/10/08 08:16 PM
. * Re: Professional in NY feeling alone jody417   09/10/08 08:12 PM
. * Re: Professional in NY feeling alone oldwoman   09/08/08 12:00 PM
. * Re: Professional in NY feeling alone Phoenix1012   09/09/08 07:40 AM
. * Re: Professional in NY feeling alone oldwoman   09/09/08 08:19 AM
. * Re: Professional in NY feeling alone Florida69   09/09/08 12:14 PM
. * Re: Professional in NY feeling alone oldwoman   09/10/08 08:13 AM
. * Re: Professional in NY feeling alone Florida69   09/08/08 09:02 AM
. * Re: Professional in NY feeling alone RevAnn   09/08/08 08:44 AM

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