Friday, 25 January 2008

Today - trying to get support - A rant!!!

Oh God what a total nightmare

I am HIV positive, my husband is HIV positive, my daughter may be our lives are in tatters and all I get from any helpline or anything I contact is platitudes like' things have moved on since HIV was first diagnosed' - 'it is not a life sentence' - the treatments have moved on' - 'you can be HIV positive for years with few symptoms'

All of which I know and for me right now that is just not the point!!!!!!!!

Right now I have a husband seriously ill in hospital - he has PCP pneumonia which is something that you get when you have HIV infection and usually, at least in the past before the effective anti HIV drugs, when it has progressed to AIDs - he will not be home for some time - and a few days ago we did not even know either of us had HIV.

Right now I need people to talk to who are HIV positive and understand the shock this has been to a couple who lead a relatively 'HIV risk' free life and therefore never imagined that HIV was a possibility. How - for now at least - it has destroyed the life of a family, our hope and dreams, our expectations for retirement and older age now shattered.

Every help line I have tried has been answered by a gay man who seems to wear his HIV positive status like a badge and take pride in telling me how many years they have been positive.

This is not an attitude towards being HIV positive I believe I or Barry will ever be able to take. There is NOTHING positive about it for us, except the bloody virus!!

I do know they are trying to help and telling me that they have carried HIV for many years and are still relatively symptom free they are trying to reassure me that HIV does not mean we will both be dead by next month. Which I know! How ignorant do they think I am ? As I am not at all!! .
I do not need to be told this, I need to find a way of dealing and coming to terms with the turmoil this has caused my family right now and this is not helping much.

I/We are not homophobic - far from it - especially me as anyone who actually knows me, including the local gay community, will confirm - but I think I/we need to talk to other heterosexual couples maybe with children with HIV positive status.

Or right now if I need peer support with anyone with HIV I need to speak to women
( of any sexual orientation, being lesbian is not an issue for me as anyone who knows me will know, but that the person is HIV positive, is female and has children is very important)

i.e a woman or women who are HIV positive and have children to think of, and Barry, if he needs any peer support, needs to have contact with an HIV heterosexual family man, with children .

They must exist but so far I have found no one like this. I guess it is the nature of HIV that the gay community are 'out' and deal with it differently . Heterosexuals with it may feel more barriers against going public? Especially on the net?

But so far I have not found anyone as yet in any of the forums or any of the support orgs I have found. And I have not yet talked to one HIV positive person who has a child to think of too!
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