This was VERY hard as in truth I have become over the last 6 months something of a recluse.
When first diagnosed and after the initial shock that lasted about 3 months quite honestly it was a relief to know what was wrong as finally I had a reason for why I had been feeling so physically, and to a degree mentally, absolutely awful for so long.
Then I felt OK and in fact quite positive for quite a while as I felt that yes I have HIV I but have skills I will devote what is left of my useful life to promote awareness of HIV to try to prevent at least one person getting it and volunteering for HIV services or running or being involved in peer support groups.
It started well in that I joined PozFem UK http://www.poz-fem-uk.org/ which was very positive for me and became a regional coordinator and helping them set up their web forum.
On the back of this I started a women's group for HIV women with KPS our local HIV charity and tried to put myself forward to do talks as a positive speaker on HIV and attempted to do other awareness i.e by appearing in magazines, newspapers and latterly TV - as I will be on Embarrassing Bodies on Channel 4 on March 5th 2010 , not as someone who see their doctors with an embarrassing condition but as someone who explains what it is like to live with HIV.
But gradually I found that in Cornwall at least my input is not much wanted and most of the stuff I tried to do failed.
Partly it seems to be because I am too open about begin HIV even for the local HIV charity - but I refuse to be otherwise even if this leaves me with no support - which of course it has!!
The women s group dwindled to no one. & came initially but most women were worried about how open I had been about being HIV and that I had goes public in the papers and I think feared being outed themselves due to association with me.
Well I know that this was felt by most and one women told me in the group she would kill me if I ever spoke to her on the street and another came to the group just to harangue me about begin open and my views I expressed early on in this blog. I was polite to her as I could see she was genuinely upset - but CRIKEY this is my blog!!!!
Another who did not come to the group, she never even gave it a try, rang me very angry with me that I had appeared in a magazine about HIV and living in Cornwall that her mum read??!!!!!
How that mattered I do not know as I have never met this woman, nor do I know her mum, nor her me? The argument seemed to be that by letting the public know that people in Cornwall have HIV it will somehow out her to her friends and neighbors - I just did not get it!!
But I DO UNDERSTAND that what matters is they felt like that and if they did then a womens group in Cornwall with me having anything to do with it would not work, nor could I expect a lot of support from most women with HIV in Cornwall myself.That I may have made a different decision had I known before I started how most people with HIV are living secret lives and more so women with HIV - at least in Cornwall.
But it is to late for me to go back into the closet now, nor do I want to !
I do have to point out that there have been two exceptions to this attitude by two women with HIV who live in Cornwall, but sadly because of work and other reasons they can not come to the group.
In addition KPS never have asked to use my services as a public speaker after I did it once and was too vocal and monopolized the group I was asked to speak to.
( and sadly I learned by this that if you have a small slot to talk abut HIV in a conference of meeting about something else, this was about gyny cancers, not to monopolize more of the slot than you have been given. But this was my first time and I was just to passionate about being given the opportunity to educate about HIV and if I was asked a second time I know I would get it right. I have practiced what I would say both in PozFem groups and on my own and I would never make the same mistake again, but I blew it and KPS never asked me to do it again!!! Surely you are allowed to make mistakes and learn???)
All this failed so I turned myself to other activities and did a Art curse which went OK but I got over ambitious and thought I could do an Art MA at Falmouth Art College without first doing a degree as I have a HND in Multimedia Design.
But I failed to get in .
These failures mentioned above are not the only failures I have had in carving out a role for myself that I feel is a useful use of my time and will do something to raise awareness in Cornwall of HIV , nor are they the only things I have attempted and failed at in the last year. They are just some of them. And i did not fail through lack of trying. To keep my self confidence and self esteem, which is rocky at the best of times I needed at least one success - everyone needs this. But i have not had any recently and I have become increasingly despondent .
So about 6 months ago I became very demoralized and have hardly been out for the last 6 months and not mixed with anyone apart from my family.
This is terribly bad for me.
My social skills and my ability to interact on a 'small talk' level where appropriate and not on an emotional level with everyone regardless were hard won as due to my childhood I had to learn them from scratch when I became an adult and went into the world of youth work and teaching.
As they are learned late they are easily lost if I do not relate to people face to face for a while.
I now find I currently have no social skills and lack confidence completely face to face.
My high emotional level of interaction is absolutely fine when relating on support forums etc on the internet as in text only and not face to face there is no point in saying anything at all if all you say is small talk like, nasty weather or respond to someone who says they have a problem with 'there there' and never mind!
But face to face especially with people you do not know, it does not go down well and you do not usually get anyone wanting to continue to get to know you.
I also for the first time feel to a dregree in public internally ashamed that I am HIV - this is whether anyone knows this or not - But most do know as I wear the AIDs ribbon and other HIV badges all the time and I made a pact with myself I would tell people about being HIV+ as one I can not lead a double life and this affects every aspect of my life but also I want to treat HIV as I would any illness. And while others would not tell anyone they had diabetes, cancer whatever, I would. It is my nature to tell people if I have an illness that is affecting me both physically and mentally and perhaps affecting my performance in what ever sphere I am in - and HIV does do this to me
But also will all issues I have faced in life, a stay in a psychiatric hospital as a teenager, PNI, childhood sexual abuse my way of coping anyway is to tell people so I have got it over with and have nothing to feel I am hiding and no one can gossip behind my back about anything I have not told them myself.
It may not be for everyone, but I am in my 50s and it is a strategy that works for me
So I decided to go back to what I know i.e technology and the web. And do an intensive course in PHP programming as it was not included on my HND and I have tried on my own but just could not grasp it and it would be useful for the PNI website and to run forums on HIV and also if I ever did decide to go back ito commercial web design it would be useful there too.
But I was left utterly angry with myself for finding it so difficult to cope with a course with strangers, my behavior on that course an how difficult I found the work.
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