Friday, 24 February 2012

Is honesty and Truth Always the best Policy?

I am now thinking I should close or stop using my blog again.

And maybe some on line groups?

My mother named me Veritee, which means truth and it was very apt. As I have always have found it difficult to be anything other than very strictly truthful. And I am afraid this has in the past , all my life, upset others.
As I often tell the exact literal truth.

 For instance as a very shallow example

I will say 'yes your bum does look big in that!' Or call a shovel a shovel.  When others would have thought it but censored what they say .

And  also will tell it how I see it unbidden and then regret it hugely, especially if the person is hurt , as that was not what I wanted to do.

I was just telling it how it is for me.
I have learnt to censor myself a little as I get older in person, but NOT in my writing!

So I stopped using this blog much about 18 months 2 years ago because as I know that when I get riled/pumped up  about something I use my blog to off load about 'exactly' how I feel and that to me there is no point at all in having a blog if I cannot do that?

But I upset some people and organisations by doing this and I need their support.

And among others KPS got upset in the past about some of the things I said on this blog, and I have blogged again about them recently and I fear they will not be pleased!

At the time, not now, but when I last 'got into trouble' with them. What I said  was not directly about the charity KPS, I did write a bit about them but the main entry in question was my being critical or rather very upset of how I was treated by one of the consultants at the GU clinic when I was first diagnosed.

As on the first time I went to the clinic after I had had my results, having been told over the phone,  and Barry had been in hospital and was still in hospital so I had not been able to talk to him at all,  but was allowed out of the ward to be with me and I said to him  in front of the consultant that he should have
'kept it in his fucking pants!'

And the consultant said I was abusing my husband? and showed me no compassion at all for what I was going through and what a shock it had been to find out you had HIV at 55, when you had never had sex with anyone but your husband since you met in the early 80s and your husband now being hospitalised, very ill with AIDS.

And KPS trustees were worried of how critical I was about this and the GU clinic at the time in and expressed this in a blog entry, because Kernow Positive Support has to work very closely with the GU clinic at the Royal Cornwall Hospital and relies on their support, apparently KPS would not have got off the ground without this support and they are very careful not to rock the boat with the consultants and doctors there.

But I did not know this.

I was just a person struggling with my fairly new diagnosis and I had gone to KPS for support and one of the issues I needed support about was how I had found at that point the GU clinic less than supportive, empathic understanding of what I was going through and I had NO IDEA it was not possible to run a charity to support people with HIV in this country without 'keeping in' with the local GU clinic!!!

And I also had no idea how or what I said on my own blog as just in individual not working for that or any charity would affect in any way KPS  anyway ( or to the newspapers as I did go in a newspaper , I did not criticise the GU in that but did say I had not felt had yet had much support from them or any one or any organisation)




But apparently it does and KPS was 'concerned' about this and a few other things I wrote when I was last very actively using my blog.

 And in fact they were very concerned simply about  how open I was, and still am, in person and on my blog, about being HIV positive and kept warning me not to be and I just did not get how it was any of their business how open I was?

I think in part , in retrospect, they were concerned about me and that I would get attacked by the general public or stigmatised more or abused or whatever and they also did say they were concerned I woud not have support form others HIV+ in the area if I continued to be so public and to say what I feel.

But quite frankly 4 years on and that has not happened greatly. In fact the most of the criticism I have had has been from some trustees at this charity and ironically to me, a few people that are also HIV+ in the area??


So they were right about that, that I may also get stick from other HIV+ people as indeed I have.

I did not at that point understand how or why I would. Surely it was my business and my business alone if I wanted to be open about being HIV positive

But I did not realise then how scared others with HIV in the area might be of a person like me who was open - which proved to be true that some were and I am a LOT more subtle now about what I say in person.

Not for myself but out of respect for others with it because many were and are still are hiding their HIV positive status, at times even from their family.

 And some who use KPS had expressed that I 'worried' them as in revealing my status I may accidentally reveal theirs, which of course I would not do and never have! Or that they would be 'outed' by association with me?

Which made no sense to me as I have many negative friends and acquaintances so how would anyone know if a HIV person was out and about with me that they were HIV+ too!!


But in the early days of my blog and being open in public generally and because by then I was partially 'associated ' with KPS as I had tried to start a positive women's group with their help, I was called into the office by one of the trustees and a worker and basically given a lecture of how I much be more 'careful ' about what I say, on my blog and in person?

They even were concerned about something I had said in Facebook they had read! Where I said something like ;

' there are women with HIV everywhere, even older women like me, even in a rural place like Cornwall, The oldest I know personally here is 62.'

I did not name that women and there are other, in fact,  older women than her in Cornwall with HIV, and some on my Facebook.

And  out of the thousands of older women in Cornwall she could not be identified by that as being 'the one' with HIV!!
But KPS was worried that I had by this disclosed this persons status!! And in fact she deleted me from her Facebook and complained about me to KPS! even though no one would know it was her.  As a women in my 50s I know loads of negative over 50 women on Facebook! She does not even say she lives in Cornwall, so no way was I disclosing her status!


But it was a lesson learnt. That some women with HIV in Cornwall are so fearful  of their status being disclosed, that they are scared of me and associating with me because I am open and I can not even mention that anyone around their age or or their gender has HIV in Cornwlal , in case it is guessed I am talking about them?

And to a degree I do get it. It is not easy anywhere to be a women who is HIV+ and probably harder if older and even harder if you are single?

I know I am protected from direct abuse and some of the things that could potentially happen to me as a women with HIV, a highly stigmatised virus, by the fact I live with Barry - married to him - and we are usually together. And I am not seen as any kind of sexual threat i.e that I will potentialy spread my horrible and deadly virus !!!

I was naive, it was early days for me, and did not realise at first that that is how women, especially  single women with HIV can be seen, of any age.
So I do now get their fear and have tired to be very careful about what I say in person.



I was also so scared that KPS would not let me try to continue to start this woman's group with their help  and I realised by then that without their help I simply could not do it as I had no direct way of contacting positive women in the area without them.

As most , if not all are quite secret about their status, so there is no way of me finding out who they are or getting their contact details without KPS's help  and many would not want me directly to have their contact details.

I have thankfully met maybe 2 since,  who do not generally 'put it out there' that they have HIV but are not scared of being associated with me and would not mind my having their contact details However most still don't want to be seen with me or associate with me an open poz women in public and do not want me to know where they live or have their number etc.

So at that meeting about 2 years ago I promised I would be more 'careful ' about what I say in future. Barry came with me so he witnesed what was asked of me and why and I really have tried to do it for the last 18 months or so  i.e keep my big mouth buttoned.
I knew I could do this in person and I have, very much tried. but I have never been able to be 'non contravesal' or refrain from saying what I really think in writing and as all contact on the web is done in writing and my blog is written.

So I simply stopped using it!

And for a while did not even use online groups as much as I had, and did not go in the media for a while.
Then I realised that this was not really achieving anything for me that I needed., I had no more support than I had had before, probably less, and I could not express myself .

So I started to go back on groups on line and then on Worlds AIDS Day I was asked to do on ITV This Morning and talk about HIV. I was reluctant at first but they said they could not find anyone else - hard to believe, but this may be true as they wanted and older heterosexual women. And they contacted me only the day before and I had to get on a plane that afternoon and it was the day of the transport strike - so maybe they could not find anyone else??

So I broke my ban on being in the media and did the show.
Then recently I decided I can not live feeling my mouth is tied.

That it's my blog and it is up to me what I write in it and why should I be scared to write on it.
And  if what I want to say is about KPS why can I not say it? I am NOT an employee and while I had great hopes of being able to work with them on awareness and discussions in school that has never happened as I have 'blotted my copy  book ' by being too open and speaking my mind right form the start and they will never trust me.

And I refuse to be scared and if I say something critical of them or any other organisation I will lose the only support I have.

However I am now having second thoughts - I will lose my support if I do not watch my mouth or rather my typing.
I also recently said something on a Poz womens group online discussion  that did not go down well.

Sadly for me this is a group that I so value and that being able to meet up for as while, when they had funding for face to face meetings with those lovely out and strong women, did change how I deal with being HIV positive, my attitude towards myself and I value their support  -

What I said it  was actually about me and how I perceived something that had happened, not about anyone else. But I named the women it happened with.

This was really not said to not to upset her, although it did and some may say you can say what happened and not name people?

But actually while I will respect usually that others want it like that and think it is best not to name anyone, you know I really do not see it like this, not in closed groups.

This incident happened, it was about how I perceived it, it was not about her and was to explain why I hardly use even their private closed group any more despite how much I respect their organisation.

And had I said - this (unnamed) facilitator after a group  had said this thing and it hurt and it is an example of how I react and how other perceive me, and that unless I have a chance to talk it through with them, and we have not met since , it can affect me for years

And if I had NOT named her she would have knew I meant her and to talk about something another said to me without naming them when most - including the person it was about -  would have guessed..........................

I feel is disrespectful . If you are going to say it you have to say who it is.

That is in a small closed group where we all know each other and it is possible to guess easilly who I mean.
But I guess I just think differently from other people. Maybe I have never learnt the implicity  RULES of social interaction, or have my own?

This could be so as I was a feral kid with no guidence and had to learn the rules for myself and I guess I often get them very wrong!


But I know I think differently from a lot of people and that probably I should not have said it at all
I have not named her or the group here as people who read this blog are not part of the group and it is not relavant to what I am saying.

Naming KPS on my blogs about their funding, I feel is appropriate.  As anyway I am sure as there is only one HIV support Charity in Cornwall that got a lottery grant and almost anyone would know what one I meant, it would be silly, and disrespectful in my view, to call them , 'an unnamed Cornish HIV Charity'?

But I agree at times I have a problem, with all of this. i.e boundaries.

That  in writing I find it very hard to censor myself and in fact do not want to as often it is my only release of how I feel I have.

But I know what I write is really not about anyone else but about me and I do not wish to hurt and sorry when I do.
But thi,  it is my blog , not theirs.

But when I am sounding off like this I can sound very critical when I get upset about something and upset otters or organisations and this is actually not my intention.

I think I am just being REAL about what I feel and my opinions and I have a right to be especially on my own blog?

Sadly others do not see it this way.

And so I am now very worried about what I said about KPS and their lottery grant

As I know that if they read it, they will read it as if I am against The Trebullon Respite Center and any funding for it .
And as this is very close to one of the trustees heart, he at least will read it as a criticism and may be VERY !! angry .
I am not at all  - and it was not intended like this.


 I support any services for those HIV+

But I don't want Trebullon Respie Center to be funded at the expense of other services for those of us that live too far to use it regularly or at all.

And I do not want all KPS services to be centralised at Trebullon , which has always been my fear,
 As effectively that will mean I - and quite a few others -  can't access those services in any real way.

And it would have been nice to have been consulted,more at least told ?

As when the radio rang me a couple of weeks ago for me to comment on this grant I had to say I had absolutely no idea at all about it.!! They assumed that as a HIV+person in the area I would know everything about it and sounded disbelieving when it seemed I did not?

And I did not even know it was KPS that had been awarded that money, or some other charity I'd never heard of?
The radio presenter did not know the name of the charity either, I asked and he said he did not know, just a Cornish charity
And the presenter expected me to know and got his facts wrong as told me the money was to create jobs for people with HIV? So I assumed it was some sort of job providing charity, not KPS

So I just said I could not comment as I know nothing about it and a charity to create jobs for those with HIV probably would not be of use to me personally as I am 59, have other disabilities as well as HIV and doubt I will ever be on the open job market again.
It made me feel stupid and embarrished not to know - not to have been told

But I am wondering if I should pull my blog entries about this?
If I don't remove my blog posts and anyone at KPS read it  I will probably be blown out by KPS anyway
And that leaves me nowhere to go if in the future things change and I become ill or Barry does and we need their help.

 But I  get the feeling I am blown out anyway in terms of doing any real work with them, or even being included in any support other maybe than the woman's group?

My outspokenness never gelled with some of the workers, many who use KPS and the older trustees anyway and I have been warned before.


Hard to know what to do??
Censor myself on the off chance that one day I will get support and be included , when I never have been anyway?

Not by KPS and not really by any other HIV charity nor many others with HIV locally

Or speak my mind on my own blog and online ? - Difficult



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