Saturday 25 November 2017

WAD - World AIDS Day 2017



It will be WAD – World AIDs Day – 2017 soon.
Most issues have a week- we only have a day.

1st December!!


I feel I have to say something, if not for anyone else but for myself.

When I was diagnosed with HIV and indeed my husband before me, little did I know I would enter a world that before then I did not know existed. A world that few do, unless they live with HIV or are directly affected because a partner, friend, family or a loved one does.



I stupidly thought I did know.

As I lost a friend to AIDS in 1984, who was a long time before that and before he came out, was in fact a once lover of mine. He died before the wonderful meds that keep us now alive existed.

And then I qualified as a youth worker with a specialisation in sexual health.
Probably due to his death and how it happened affecting me hugely, so when I had the choice in my work as a youth worker, I always worked with HIV issues.
I was involved in running HIV awareness youth workshops in the 90s. I worked to do this with those then living with HIV. I still have the paperwork and the handouts – so little we knew then and then there was no effective medication.
I also helped organise and run HIV awareness events at the then City hall in Truro, Cornwall in about 1993.

But I did not get it, even so.
But my mistake was in thinking, when I was diagnosed that all had changed now. The awareness attempts I  had been involved in, In terms of stigma, and awareness had worked, more than it had.

And in terms of those that live with HIV dying before their time, in terms of suffering, hardship and the daily challenges of those that do was a thing of the past.

I thought by the time I was diagnosed it was a different ball game. That the meds totally worked, for all,  that stigma had gone, that it would be OK for me to be open – I could not feel I could do anything else but be open anyway due to my friend who was and died in the 80s, but I thought it would be a very different and OK thing for me to be so.

I was wrong.
It is different, but it has not moved on as I assumed it had.

On the very good side I have met, either online or indeed in person, with such wonderful people that my life would not have otherwise caused me to meet. And all over the world, mostly online but some in person.

I was introduced to a huge world I never knew existed and at a time that yes, in my then early 50s, I was beginning to get entrenched and less flexible in my views.
Well for me HIV changed that.
I do not find it possible to be fixed in my views, nor blind to others experiences when living with HIV.

It confronts you with different issues, different people, different realities every single day. Well maybe not all, but it does me.

In more recent years, 6 /7 I have been blessed with interacting with so many people from counties in Africa who live with HIV. Mostly South Africa, but also Zimbabwe, Kenya, Nigeria, Mozambique and more.
I did not target any country or origin. Just those also living with HIV, like me and my husband. But many I met were from other countries than myself.
All over the world!! Probably, almost, every country in the world I now know someone living with HIV.

But two of the groups I am an admin in were joined by mostly those in African countries.
I do not think I will ever be blessed to go there. But I think I understand at least some of the issues they face, and they have given me so much.
I have also ‘met’ so many from all around the world.
And it is a funny thing but in the social media world, we know each other well despite never meeting or likely to.

But I have also lost so many.

Some actually due to AIDS, despite the current medications,  and some in the last few months. There has been a lot of deaths recently in the HIV online community. I do not know why.
But maybe in some cases because those that have been battling for so many years are now aging, and despite what many think , even with the current wonderful medications HIV takes a toil on your health others who are not living with it do not have?

Many were diagnosed before these medications existed and others were diagnosed late. Others did and still do not!! not have access to such medications, others they no longer work for, others refused to take them.

A few I knew even here in Cornwall. One lost her battle just 2 years ago who would not take them and another who the meds no longer worked, others that got co-morbidities, caused by the meds or HIV directly,. Those with HIV get cancer and cardiovascular, kidney and liver issues plus HBP, Diabetes, bone issues far more than those without. Plus many others online.

Two I knew,online, died in the last month.
One I know now is battling right now and I am told will probably not make it.

A very long term survivor. Diagnosed initially with GRID - Gay-related immune deficiency - as they did not know then about HIV and that this was causing it and the majority, if not all, known then, were gay.

It must have been very hard to be diagnosed, when heterosexual and male, at a time it was seen as a gay only condition in America, when he is heterosexual and at the time married. This, he said, caused him a lot of problems with stigma, wrong assumptions about how he got it, even treatment. And sadly his wife did not make it, she died of AIDS, at a time most did not accept women got HIV.

He can be very 'difficult' to know, well for me. And he blocked me many times.
I never said an unkind thing to him, not ever.
But he is so very sensitive, lives in a very different world from me and I can be blunt.

But I am very fond of him.
And very sad another warrior is struggling.

 I guess my point or writing this at all is HIV has not gone, nor sadly has death via AIDS or due to complications of living with HIV and some so very young.
I am in my 60s I am very lucky to still be relatively OK and I so know this.

And that sadly  new diagnoses are still happening and to live with it is pretty dire, wherever you are in the world it is not good, but in some places it is very bad.

I have good medication from the NHS. No social support I only find this online but my medical care is good.
But I am lucky, as I live here in the UK. I talk to those every day that are still on medication that I was on myself up to 9 years ago that if I was still on it I would either be out of my mind or physically in a very bad way. I have bone problems due to it and kidney problems and it sent me totally loopy.

All now recognised side effects including the fact it crosses your blood/brain barrier and causes mental health problems. Some it causes psychosis. I was affected and near to this. But when it got really bad I had the option to change meds as other ARV medications had come online within the NHS by then. Also I changed to another med when my kidneys started to be damaged - too late for my bones but at least my kidneys and mind is relatively OK!!

But many in many parts of the world do not

All too many in the world I talk to have no choice but to take this and other older  medication.
It is all that is offered under their countries HIV schemes. Often funded by aid and only generic versions – which is a different issue again
But like I had to when that was all that was offered, they have to take it.
As anything is better than the alternative.

An alternative I saw when my friend died in 1984 and when, not so long ago I watched my own husband nearly die of AIDS.

This is a draft.

Just my first thoughts. I may add to it.
But I wanted to start to get them down

 



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