Saturday, 27 November 2010

Dairy of a rural HIV Cyber Activist

I have decided that if I need to define myself at all this is what I am. As in the very rural area I live in there are few HIV agency or organizations and none that wish to work with me in my aims to challenge HIV attitudes, stigma, raise awareness and educate predominately amongst HIV neg people. So all I am left with is the virtual world of Facebook, twitter and blogging from behind my own computer in my remote rural home.

From the very moment I was first diagnosed HIV, right from the start I wanted to ‘do something’ to make a difference. This is apparently not an uncommon reaction to being diagnosed HIV poz and many people shortly after diagnosis fling themselves into voluntary work usually with or to support other HIV people or even manage to get paid jobs with HIV charities or organizations

But I quickly realised that my aims in this area were not did not always gel or sit nicely with the aims of other HIV poz peoples aims and endeavours in this area.

As when diagnosed I knew no one who also had HIV and literally thousands online and in person who do not have HIV. And while I’ve met a few who are HIV+ since, due to the clash of fundamental core reasons, beliefs and rational between what I want to do and why I want to do it I don’t and I may never have any close friends or know many that are HIV positive too. The reason for this is something I will try to explain and expand on here.

As my interest was not ever and is not to inform those already HIV positive.

As put simply and it is a lot more complicated than this, I figured, which later turned out to be true, that if you have HIV in a very short time you know more than the general public about HIV but sadly apart from treatment options and research into cures and treatment, what you know is no use to you as in many ways it’s too late for you.

Nor was or is my interest to primarily to support others like me who are HIV positive.

This does not mean I don’t want others to have support or that I do not care. As I do care very much that those who are HIV+ locally, in the UK and anywhere in the world get the best treatment they can and are supported in every way they need.

Also after all myself and my husband are HIV positive, indeed we were both diagnosed when ‘officially’ we had AIDs and my husband has already been very ill, been hospitalised and had PCP, an AIDs defining infection. And understand the need for support when you are HIV+ and wish there was more and better support, especially emotional support and will champion anyone who offers this.

Sadly both my husband and I have not managed to get any emotional support that works for us. I am not saying that people have not tried so it may well be a lack in us not the very few services we have been offered, and while we at the moment manage to just about rub along and cope psychically and practically with little or no support right now, we both know there will come a time that one or the other of us or both we need lots of this kind of support. All I can hope is that when this is needed those that can do this and for whom it is their skill will support us.

However this is not my skill. I have always been an activist or probably more of a pioneer, as one friend described me., in lots of stigmatised issues and campaigns before I ever had HIV.

And a pioneer in stigmatised issues does not make many friends, they are often feared because they speak out and refuse to do otherwise and cannot be controlled. A ‘wild cannon’ is how I have been described in the past and while this is not totally so as I do nothing without at least considering or knowing what I am doing and not without thought and considering the consequences, this is how I am often viewed by others.

Those like me who take in all information, weigh up what they think and still speak out with what they believe and are not deterred from this by others views and so often ‘go against the grain’ are often disliked, can be feared even by those who also share the same issue. Many that do at first befriend you when it is realised that your voice can not be tamed disassociate with you or don’t want to know you.

And while this is at times so for other issues at I have found it completely and always true when it comes to being an outspoken activist on HIV with HIV living in a rural area, or perhaps living anywhere.

And so being an activist like me I have found often makes it impossible for me to support or even be liked or associated with by other HIV people. I get far more support ironically from HIV neg people with very little idea of the issue than I have ever received from those HIV positive or those working to provide services for those HIV+

I understand very well why and maybe at some future date I may explain but for now I just have to say that this is so.

I do find I can be virtual friends online with those who feel safe because they are never likely to meet me or with other activists that live in other parts of the country. But in terms of having any face to face support or just anyone to talk to and share situations and bounce off of with ideas and views etc from any other HIV+ people that live in my rural county that I could meet face to face, so far this has proved impossible.

Most I meet in person and not online with HIV are scared of even being seen on the street with me in case their own HIV status is outed by association. Others are scared I may, while using others stories to make an awareness point that I may accidentally expose them.

The facts are I do and will not do either as far as I can avoid it but at the same time I will not be silenced or muffled and attempts have already been made to do this.

But that by association with me their own status was exposed would not happen as easily as other local HIV poz people far as one I think about what I am saying or writing and the consequences to others as well as myself and I just do not understand why so many think I do not and seem to assume I talk/write completely without thought and say anything that comes into my head? All I can say is yes I am impulsive at times especially when upset or fired up over an issue but those that think I do this as a regular thing just really do not know me or who I am. Everyone makes mistakes sometimes, but if I remotely put another’s status in jeopardy of beign exposed if they are not out and have not given me permission, I never do and never will do deliberately. But everyone makes gaffs or mistakes as much as they try to avoid it. But it seems that in the eyes of other people that are HIV+ but not out there is not room for me to make the odd very minor mistake that I will put right as soon as I am made aware of it.

I understand why, and accept that this is so. As while many non out HIV people think I do not get it and do not worry about what people think of me or whether I am judged or stigmatised and do not get their fear. Believe me I do and fully accept why they may not want to know me. But accepting this and understanding does not mean I am not often lonely and hurt by this lack of trust and friendship of me from other HIV+ people

And also as I know few HIV poz people locally that I would ever meet face to face and while I may have few close friends - especially since I found I was HIV and have become so outspoken. As I have lived where I do in a small rural community for nearly 26 years really do know by acquaintance at least and they know me, hundreds of people who are HIV neg so no one would even think if I was talking to someone or was with them on the street or in a café, pub etc that my companion or the person I was talking to was HIV poz.

And I assure all that when using others stories to illustrate a point to raise awareness I only deliberately use the stories of those I have permission to use and unless I have express permission never names or where they live. That some that have not given their permission have assumed I was talking about them when I was not, I have to say this is their own internalised stigma and paranoia and nothing to do with me as I never out anyone deliberately.

But oh yes I am not perfect. I am sure I have made some mistakes in this and will again. But if I am to try to do what I want to do and raise awareness and fight stigma it is a risk I have to take, and one that they have to take if they want to know me. But I do think before I write or speak and I NEVER deliberately our s anyone’s status unless they are fully open themselves.

One day I hope one day to meet like minded people with HIV in Cornwall who are open or sufficiently open about their status not to be scared of me, and can tolerate the odd slip up in the pursuit of raising awareness but so far I have not.

As you can imagine this is a very lonely place for me to be right now

Anyway as said my interest or rather skill is not in supporting others with HIV but in challenging attitudes, educating and raising awareness amongst HIV negative people in the hope that they will ‘get it’ remain negative and also cease to stigmatise those of us who have been so unlucky as to already have the virus.

To do this is counterproductive it seems to being friends with other HIV poz people. Well it is in my very rural area anyway and to a degree elsewhere . And even counterproductive to me even working or volunteering with my local HIV charity, and other charities etc further afield as their main concern remit s to support their ‘clients’ and not to raise awareness and challenge the attitudes of HIV neg people.

Each to their own is what I say. We all have our interests, skills effectiveness and paths to tread. Understand I tread mine with thought and take risks that I know will alienate me with thought and because I want and need to. If you cannot be my friend and support me leave me alone to do what I have to do.

I will not interfere with your path – do not interfere with mine