Sunday, 21 September 2008

Poz Fem - Bristol meeting 3rd to 5th October

It is not long now until the PozFem regional coordinators meeting.

And on the one hand I am really looking forward to it - on the other I am really scared!

I am aware that my diagnoses has not been long and that many of the women I will be meeting will have lived with HIV for a long time, and that I am still new to the issues, and in many ways still very ignorant.

Many of the women who will be at this meeting have been activists or involved in support work for some years and many have attended World Aids Conferences - some went to the one this year in Mexico - many others work for organizations such as Positively Women and ICW - International Community of Women living with HIV/AIDs etc.

And I do not work for anyone! I am just someone who was only diagnosed in January and while I did some HIV awareness work as a professional youth worker, this was years ago in the 90s and at a time I did not have HIV myself.

I think I may have been asked to be a PozFem regional coordinator because I am the only woman this far west (Cornwall) who has so far wanted to be involved - there are other South West regional coordinators in Exeter and Bristol I believe who have been involved for some time, but no one until me in Cornwall.

I am really looking forward to meeting theses women who have done so much to raise awareness............

But I think what I am scared of is being attacked or that my contribution is inappropriate or of anyone being angry or disapproving of me. I do have a difficulty with this in group settings anyway as I always expect or worry that I will be attacked and often have been as I am too loud, talk too much, too opinionated etc

I think I am coping surprisingly well with such a recent diagnosis of HIV and have traveled miles so far in trying to understand the issues and what it will mean for me as a person - but I have a long way yet to go.

Ironically perhaps one of the reasons I am coping reasonably well so far is because my life has never been plain sailing, simple or easy and because I have faced many issues before - difficult childhood, abuse, homelessness, drug use as a teenager, mental health, Post Natal Illness, coming to terms with physical disability etc

I think that had I always lived the more peaceful life i.e of wife and mum, married to the same man living in a nice home with a reasonable income that I have lived for the last few years since I recovered from Post Natal Illness, HIV would have been much harder to cope with and more of a shock!

One the one hand I did not ever expect to have HIV myself and I certainly did not expect my husband to have HIV and become so ill ( as he has always been such a fit man I expected him to outlive me easily) but on the other hand HIV is in some ways just another issue and one I have to deal with and use what I have learned in the past from other issues I have faced to deal with it.

But while left to myself I am dealing with it the one thing I have always needed in life is approval, especially for some reason approval from other women. It does not seem to matter to me as much if men do not approve of me, I have my man and as long as he approves and respect me this is enough!!

But approval and especially from women for some reason is a big part of my make up of what I need - and if not approval at least not disapproval. And at times in my working life especially needing this approval has got in the way of my doing a good job for those I represented or was an advocate for.

And I feel particularly vulnerable to disapproval right now, since I found I had HIV - which is why I think I reacted badly to my first consultant as she is female of similar age and intellectual/professional ability I was very/or over sensitive to being misunderstood and judged.

So I know that as long as I am not attacked at the meeting in Bristol I will be OK , but I fear that if I feel - rightly or wrongly - attacked, disapproved of, or judged I will make a fool of myself and cry - something I especially do not want to do at the PozFem meeting.

I want so much to be a productive and fitting representative there of women in Cornwall living with HIV and their needs as well as my own and not be seen as a victim who's diagnosis is too soon for me to do a good job of this.

They say on their website about their consultation document that I distributed in Cornwall:

  • We hope it will serve as a useful advocacy tool for HIV positive women around the UK. We believe it is crucial to ensure that our experiences as HIV positive women inform policy, and we feel strongly that the issues we raise here are important and relevant for a range of policymakers, service providers, voluntary organisations and activists involved in gender equality, sexual health and HIV.

So I have tried to take in everything every woman I have met so far (or spoken to on the phone or on email) in Cornwall living with HIV has said about what is important to them and the issues they face and while I want to represent how it is for me I also understand that how it is for me is not how it is for others and do want to represent them well too.

I do not want to let them or me down!

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