Saturday, 20 September 2008

Cornwall Womens group - what I was trying to say

I think what I was trying to say below about the new group
Is I feel such a group is really worth while

But after thinking long and hard I feel if my presence in the group feels too 'risky' due to my going public about my HIV - for other members I am totally happy to withdraw from the group.

I have decided that I intend to say this a the next meeting as it is more important to me that if it is valuable this meeting happens - than I actually attend it.


I acknowledge that we all have to find our own path through living with HIV

And I respect this absolutely and totally.

And know that however well we seem to be coping form the outside - this thing is a nightmare for all of us and a terrible thing to have to live with and through!!

Some of us may need not to tell anyone - and others - such as me for instance - may need to be very public and join activist groups etc

  • I especially understand why those living with HIV who have young children or jobs that they value may feel especially that they need to keep their HIV status totally to themselves!! My daughter may now be 19 but it seems only yesterday that she was a baby !! and I know how much you feel you have to protect them!! So I RESPECT this so totally!!

I also was once a youth worker for Cornwall County Council for 14 years and before this another 12 in London - so I understand why a job may mean that you have the need no to be open about HIV - also I understand why relatives, the estate you live on or the area you live in, community, friends may make you feel you can not be at all open about HIV - and I respect this also.

  • But I also feel that even women who are having to live keeping their HIV status to themselves in Cornwall may benefit from a peer support network where even just for a brief hour or so and in a safe place..............
  • A place where we can all can be open!! a place where no one will judge and a place we can actually air openly our concerns, feelings and distresses - as distress goes hand in hand with HIV for most

But I accept

No one who attended the womans network knows me very well or trusts me at all - or each other as yet! - and trust will take much time.

- and as I have been 'out' about my HIV in the press and on this blog and belong to many HIV organisations in my own name and fully out about it.

I therefore understand that no one knows me and do not trust me and have no knowledge of how I have a long track record of being out about an issue indeed being an advocate for an issue and yet still being able to keep others confidences/confidence on the subject.

I do understand that my having gone public may mean that others may not want to be seen with me - as Cornwall is quite a small community

  • However as I have lived in Cornwall for over 23 years , have relatives in Cornwall and many friends and acquaintances, few if any who have HIV and am often to be seen about in Cornwall in the company of many different people and also with those due to my work with Post Natal Illness as well as relatives friend and others who have NOTHING to do with either issue!!!

So actually even though I have gone public about my HIV, if someone was seen with me there would be no reason at all for anyone who knew either of us to make the assumption that they have HIV or Post natal illness for that matter.

So I do not think that my continuing to be public about my HIV, be involved in activism for HIV rights and issues and yet still attending a local HIV womans group are both not compatible?

But I am willing to withdraw from further meetings if the others would want me to? And at the next meeting I will ask if they do.

As I do no feel I can just creep away into the woodwork now!

The path I have chosen to take for the rest of my life regarding my now being HIV positive is to use my experience to raise awareness, to change attitudes etc if I can.

After all I am not alone in this those who founded such organizations as KPS or even THT, Positively women, Worlds Aids Day, International Community of Women living with HIV etc all must have similar motivations and my ambitions and my motivations are so much tinier than theirs?

- all I want is to help in setting set up specific peer and other support services in Cornwall, and raise awareness within Cornwall of HIV.

Another big reason being is that I have a 19 year old birth daughter and have had a foster children and I want to ensure that at t
hat at the very least they and their friends have the knowledge available to keep them HIV free!!


Anonymous said...

Vee - please do not withdraw from the suport group. You need support as much as anyone else and if it wasnt for you the group wouldnt even be initiated!! If people have a problem with you attending having goene public then they would do well to remember how the group got set up in the first place! I totally understand why people want to keep a low profile with HIV (though I do think that in the bigger picture this does not help combat the stigma), but you have fought for services in your area, and if anyone should be using them then it is YOU!!

You are to kind for your own good, always putting other people before your own needs. STOP IT. This is time for you to get what you need out of people and life.

I seriously hope that noone wishes you to withdraw, and if they do I really wish you wouldnt. Noone here is looking at the bigger picture of what you have done.

Sending you my love

Helen (WG) xx

Veritee said...

Thanks - I'm OK - and thanks
I am having a bit of a wobble I guess?
It is just that I have found that the issues involved in HIV are just so complicated and I am so new to it and everyone has to find their own path through this journey.

My path has been to choose to go public - I am not the first and will not be the last - and to document my journey on here. And to join action groups etc. I doubt that however long I live with this thing that I will change this , unless I am physically unable to type
BUT, I do not want my choice to adversely affect those who have taken a different path, and given all with HIV different circumstances we will all have different paths.

But at the same time I can not be forced not to not do it my way, because I have to do it this way for me.....and also for my daughter and maybe if she has children her children.

I fear that if she does, given that all of us in our family rarely have children until our late 30s early 40s I will not live long enough to know then or for them to know me and who I am, warts and all.In a way I feel I may be communicating on this blog with them too , if they ever exist!

So I feel like many, that I want to document this on the web but am beginning to realize that my doing so may be incompatible with trying also to start support services for others in the area I live?

I would only withdraw if it became absolutely necessary and do not want to.
When I started the Post Natal Illness support it was a hugely stigmatised and complicated issue and my being public and encouraging women to speek out ( anonomously however on the web only occasionally in face to face groups) and to share their stories too did have some backlash as you know and backlash which was painful to me at times. However this was mostly in the past. But living with HIV it seems is even more stigmatised and complicated than Post Natal Illness.

Thank you Helen you are a star, I need my friends right now