Thursday, 21 February 2008

We have decided to speak out!!!!

Barry and I have decided we will 'go public' about this!

I already have in a way as I have told all people I wanted to tell for my own reasons and support - but now we have decided that it may help others given the situation regarding HIV in Cornwall, to be totally open about it.

I do not really need anything further from people at the moment, except their friendship - and to be able to tell them about it and they not judge me/us for having HIV.

However I do want to have peer support from other women who are HIV positive - but it seems this is not at present possible in Cornwall as I will explain below.

I am indeed looking after Barry, but he is also looking after me. He always has/we always have. We are both looking after Caja, as are her friends.

The only trouble with Barry's and my relationship in the past that led to my needs spilling over, especially once I began to feel unwell about 2 years ago - was that he was at sea for months of every year, and that I hated it yet he refused because he was too scared of not having a wage to give up his job and stay home, even though I was worried about my memory and my escalating mood problems as well as feeling unwell physically.

As when he is not at sea his support is all I have needed apart from my friends company. It was only when he was away and the plug was so suddenly and regularly pulled on that support from him that works so well for me, that in the last couple of years or so when I have been feeling so peculiar/odd and did not know why .

But now he will never go to sea again and not leave me except for death - so while he is alive we can support each other and not put to much on others. It is not fair to, as this is not their problem, but I do need friendship, that is all I have always wanted/needed from people really.

However Barry has again become ill with something called PCP pneumonia which often kills those with AIDs. He did have it and seemed to fight it off it with the help of hospital and drugs but it has now come back - I truly fear he will not live long and
....then I do not know how I am going to get the support I will need.
But for now it is OK. And I will now try never to upset anyone and ask for support if it is inappropriate.

But as for the worry people will judge us that I mentioned above - this seems to be a problem for people with HIV in Cornwall - we in fact have not experienced it as yet - but we keep being told it exists

We have not had this - all of our of our friends have been great ....... but I am repeatedly told that others have been really discriminated against with HIV in Cornwall

I have only had one very adverse reaction and another milder where she just will not talk to me anymore, otherwise everyone has been wonderful!!! And it is apparently very rare when you have HIV in Cornwall not to have huge adverse responses - we are very lucky!

It is, according to the HIV clinic, those few in Cornwall I have spoken to who know about HIV, and the HIV support service 'Kernow Positive Support' a rare to experience as little prejudice as Barry and I have so far.

Even Barry's very 'Cornish' working man' friends have been absolutely great!!!!!! This is probably because he is a lovely person and has been a good friend and loyal to them for over 20 years. I am pretty certain that if they had not loved and respected Barry so much and known him so long the reaction could/may have been very different?

And for me - I mostly do not become close to or worry about the attitudes towards me of anyone that may be bigoted about any issue, especially one like this. However those in this village community a few who have ‘heard through the grapevine’ about our HIV and who I expected to react badly have actually been marvelous too - but then again we have lived here for over 20 years, I have done a lot for the community including being the chair of the village committee for about 10 years, raising lots of money for the village including enough to convert a chapel into a village hall, the play area, and I used to run many village events, and at one time the youth club etc - so I do have respect - more than I knew until now.

However the reason I feared discrimination so much - and we may well yet meet it - is because this was the first thing we were warned about by both the HIV clinic and the local HIV support service. We were also warned, many times, not to tell anyone about our status!!

But we just are not built like this, and especially me.

However we were told not to tell anyone because those in Cornwall with HIV and who have been open have often met will appalling prejudice.

Consequently few, if any, are 'out' about it and even the KPS charity offices and support centre has no identification so that no one nearby will know what the centre is for. When we visited and as the door was opened, I asked 'is this the HIV service' as there was no sign to tell us we had come to the right place!! so I was not sure and was told to shussh until I got inside as you were not supposed to do anything to give it away that this building is a HIV support center!!

I find this all awful, but understand that people are entitled to their anonymity if they need it when they have HIV..............I respect this but not that the charity itself can not be open about what they do?

But what really shocked me was when I was told that while men apparently do meet up to talk about their HIV at the center and otherwise meet and support each other - I was told also and that the KPS charity office staff are all men, I think all with HIV -

And pretty much, from what I have been told so far, most women with HIV in Cornwall are hiding away in their homes, both struggling and probably alone, with HIV and also running scared of the prejudice and adverse reaction that are terrified they will get!!!

This for me is so far only hearsay - I have not yet been able to check it out for myself. But I have asked several times to be put in touch with women with HIV or any women's support group or network and have been told that the position is as I have written and that there is no women's' HIV support group/network!!

I am going to go to the drop in at the support center next time I go to the clinic - not next week but the following Wednesday - and maybe what I have been told will hopefully prove to be wrong and there will be some women there, or some I can be put in touch with - I do hope so, I will write about what happens on this blog

But consequently, so far, this means that for me there is no support whatsoever!! Well not the peer support from women that I badly need right now!

I desperately want to speak to women with HIV face to face - I have been talking on the telephone with a woman in London , with HIV, from Positively Women who does telephone peer support - but I really want to talk to other women with HIV face to face.

I do feel my needs are different from men's, either gay or straight, but it seems the other women with this in Cornwall are scared to tell anyone or even tell or meet other women with it!! This is a terrible situation!!

I intend to do something about it, if I possibly can and if I am given enough time before I get really unwell.

As the only way I am going to get the support I need for myself is to make it this support - and I hope to start a support group for women who are HIV positive.

Positively Women based in London who said they can help. KPS say I can use their building for meetings.

However I am aware that I am probably not the best person to start such a group right now, nor will I be able to do it until I have at least accepted the situation and worked round/processed my feelings and this could take sometime.

So for now what I /and Barry intend to do is tell people - both of us just can not stand the conspiracy of silence that we found there is in Cornwall around HIV.

We respect others with HIV right and need to keep it silent and have been told that they have good reason too. But we do not feel we need or want to.

We have been told that many with HIV in Cornwall, both men and women, if they are not yet ill and controlled by HIV medication are often trying to hold down jobs and quite a few women - and some men - have children still in school. And most who have attempted to be open about their HIV have experienced discrimination that has affected their lives badly, such as losing their job - employers do not give HIV as a reason but they still shortly afterwards lost their job! Others have had to move and change their children's schools or been ostracized from their community.

That most women and even a lot of men with HIV, do not even access the support centre. A HIV counselor I met recently told me (she did not break confidentiality and did not give names, she was just was giving me an example or how scared people are - especially women - in Cornwall of talking to anyone about their HIV status) ...............that she once saw for the first time a women who has been positive for over 4 years and finally agreed to counseling, and that first session was the only time she had openly spoken about her HIV to anyone - even at the clinic she would avoid talking about anything but medical needs - apparently there are many more like this.

But Barry and I can speak out and intend to and probably will quite loudly.

It seems for some reason we are in a different position from most with HIV in Cornwall and the reasons may be:

  • We have not - as yet - been ostracized by our community or our friends, and do not care if those who are not already part of our lives react adversely - as at most it may make them think and at worse they will avoid us which does not worry us in the least!!!

  • We do not have a school age child or children and Caja is fully aware of the position and has told the friends she cares about and their parents know and all have been fine towards us

  • We do not have to try to earn a living anymore so we have no employers to worry about. Barry will get a pension which will keep us well enough without benefits, not great, but we will manage - except DLA which he may get as he is so ill - and if he dies I will get his pension - he has worked very hard for this.

So while I am not, as yet, mentally in a position to start a woman's HIV support group.................

What I - and Barry - intend to do for now - if the position as we have found it so far proves to be right - is to try to speak out about HIV and try to change the lack of understanding and support in Cornwall. We want to do it for all those hiding in their homes unable to access support because they are too scared to tell anyone!!!

So you are now welcome to pass on what I say and tell others and share my blog and eventually I may try to go to the Media.

If it means one person thinks about and revised their attitude then it is worth it.

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