Saturday, 31 May 2008

Went to the papers !!!!!!!! Why????

I went to the papers about our HIV to try to protect others, perhaps ultimately even those I love, even my daughter and her friends, from making the mistake Barry has that got us in this situation.

It may be published in the Sunday Mirror tomorrow!!!

My logic in going to the papers was not to 'tell all' just for the sake of it, or to say poor me

Nor because I feel we are any different from thousands of people who have got this thing.

I read some back issues of the Positively Women magazine sent to me and my story or one very like it was repeated so many times and that is just the tip of the iceberg!!! There are so many of us, I am not special at all!!

But I wanted to try to get HIV back on the agenda, especially with heterosexual people and especially older heterosexual people - as HIV just seems to have fallen off the world when it comes to issues that most people are concerned about in their everyday lives.

And to make the point that the sooner you know the longer and healthier your life will be.

It is still the case that if you are not treated, you will eventually get AIDs and without treatment die - nothing has changed this - here is no cure

But there is no routine testing for HIV, in the UK, that even if you go to your doctor very unwell you do not get an HIV test except if you ask - and so many would never think to ask - we did not until it was almost too late for Barry!

Yet over the last years or so we have both had tests for numerous things and me especially because of my ankle I have has a few operations and Barry has been losing weight for over a year and has been getting infections all the time.

So among other things we have been tested for:
  • diabetes, MRSA - before my operations to protect others if I was a carrier, prostrate cancer - Liver function tests, Barry as they wondered if this was why he lost weight, anaemia, cholesterol, thyroid, heart and artery disease. We have both had full blood counts, blood tests for infection, I have had a smear, a mammogram................
  • but no one ever offered us an HIV test and HIV DOES NOT show up in any of those routine tests!!!

I wrote this in a forum:

I can talk about it – indeed I want to talk about it. And I find myself talking about it. Not always or even often my actual own illness - but about the fact we have it and about HIV

but the people I tell just often know so little about HIV but because they know me that realise it may actually concern them and want to know. And I want to tell them – I want to tell them that HIV IS NOT curable as many I talk to seem to think, that the medications are not a good thing to be on - that they can give you long term side effects and even on meds you may still get a range of illnesses that HIV people can get and I want to tell them how they can avoid it – HIV - as while I always knew how to avoid it and ironically I am the one who has it, so I thought everyone else knew………….but they don't .

At least here in the UK the message about safer sex has not got out, well not to the heterosexual people I talk to both young and old. And when I say everyone, I mean nearly everyone. I am not so dedicated to raising awareness that I tell strangers in the street, acquaintances I will not see very often or the postman but I have told my daughter, my family, my friends, my community and have already been on Local Radio and maybe in a UK National Newspaper on Sunday.

I guess the reason why this is not difficult for me is I feel no shame, and feel I took no risks to get this. I do not judge anyone who may have got this through sex that may have known was risky for HIV or drug use - I do not judge at all. As to me this is simply a virus, a particularly nasty virus that can and will kill you without treatment, but the virus does not discriminate, it does not care how you got it, it just lives to survive.

But I guess the reason I can see it this way is I got HIV from my husband of over 20 years, and the only person I have had sex with for over 25 years, and I have also not had any other risks such as drug use in this time. So I come to this with no feeling of shame and find the stigma about what is just a horrible virus I do not mean anyone should feel shame – I just mean that since I found I had it I have found that many do feel shame, and this is a lot of the reason people do not tell people that may have told about another illness such as cancer etc

Indeed already in the short time I have known I have HIV I have spoken to a few people with HIV who have explained their health difficulties by saying they have another illness, cancer, emphysema, an immunity problem etc out of shame of saying that it is caused by HIV

And the reason I inform as many as I can and intend to until I run out of energy - which may not be long, as it is tiring - and have gone to the National Media……….. that if myself and my husband had HIV so long without knowing it that he developed AIDs and even when he was seriously ill his doctors still did not suspect what he had...................then this could be happening to others?

As his HIV - and mine - was only discovered and started to be treated ( I did not have AIDs as yet but my CD4 was getting low and I was not at all well) was because I ASKED for a test

It occurred to me that HIV had to be the only explanation, and although I personally knew no reason why me or my husband could have acquired this, I asked for an HIV test for both of us. And our doctor even did not want to give us that test!! Our doctor was as ignorant as anyoneHe almost refused to give us an HIV test when I asked - as he felt I was suffering 'anxiety' that I was over reacting to what the Doctor thought was my husband just having a bit of flu - I could see he was dying - and our doctor only did the HIV test to 'humour' me because I insisted!!!

The next day my husband was in hospital, on oxygen, intravenous steptrm and other antibiotics/meds etc and he almost died.

How many other, older heterosexual people especially, in the UK at least, do not even suspect they are HIV +?

I feel I have to speak out But even if I only spoke out to my friends, family and community I would hope by doing that it will save someone from this nasty virus!! Even if only my 19 years old daughter and her friends - who do not consider HIV AT ALL!! take note, and use safer sex, I may at least protect them! The ignorance I have found about HIV is shocking.

I only spoke to a 24 years old daughter of a friend just yesterday- her mum wanted me to tell her and she was interested or I would not have spoken to her - who thought that HIV was not a problem anymore!!! as if you got it, it was curable so there was no need for condoms etc as if you get it you just go to your doctor, gets some meds and you are cured!!!!!! and she is with a man in the british forces -

-my husband is a seaman and apparently merchant seamen and those men in the forces are high risk groups! I have spoken to young men and men my age who have NEVER used a condom in their lives!! And women who try but the men do not see wy they should use a condom - and this is in the UK!!!!!

Because HIV is only gay men and 'poor' people in Africa they think and again a lot of them thought that HIV was now curable with the right drugs that we can get in the UK

...............I have spoken to many older people like myself who are now again having new relationships because their long term partner has died or they are divorced .....and few of them knew that HIV, or STDs was something that should worry about, as HIV was not around when they were young and STDs were not something to worry about as you just went to a clinic, if they worried at all.v

I do not expect everyone - or even anyone - to react like me and tell everyone at all!

While it has not been at all hard for me to do this and I have had few, if any adverse reactions, I do understand how hard it can be to disclose. I now know someone with HIV who has only just started to talk to anyone after 4 years, another who has not yet told her grown up children after 7 years, another who has younger children who still do not know............................I do understand and respect we all have to handle this differently

But this is my way - If just one person does not acquire HIV because they remember me and what I have said and use a condom or one person gets diagnosed before they have AIDs like my husband - I will think it was worth it. It is for me the ONLY way I can deal with this thing right now!!

But there is another aspect I have lost several friends to other illness, cancer, heart problems, strokes even though I am only 55. And I have always shared my health or lack of it with my friends and family - if I just had a cold they would know about it and anything more serious, even if it was not life threatening , which I have had, I would tell them and expect them to visit me in hospital etc and visa versa.

Had they not told me they were ill, even those who have died, I would have felt it a betrayal of our level of friendship or relationship if a family member. I wanted the chance to support them and to try to make their last months or weeks better with the support of friends or family.....and

I feel the same the other way around - that I would always tell my friends and family and even my community as I have lived in the community for over 20 years - if I had an illness that could affect my life or ultimately had the possibility of killing me, I will tell them . I refuse to treat HIV any differently!

  • If I did then for me the stigma about HIV has won, I refuse to be stigmatised or go along with that stigma.
  • HIV is just a nasty virus, it has no thoughts on the matter, only people do.

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