Wednesday 21 July 2010

HIV and the over 50s in the UK

The Vienna AIDS Conference, currently happening now - which I so wish I could have attended but could not - has led to more awareness of HIV in the older generation and in the UK. I do not have time right now to re-write it for this blog so I have just reproduced my comments I sent to national UK media on this

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Both my husband and I, now 58 and 57 are one of theses statistics as we now live with HIV, we have known for approximately 2.5 to 3 years.

Since my diagnosis I have tired my best as just one individual to raise awareness of the rising rate of HIV in older people and the risks of HIV for those over 50 specifically.

And to draw attention to the fact that HIV has not gone away and new diagnosies are happening every day and amonst all, gay or straight, women and men and in all countries in the world, including the UK.!

To that aim I have since my diagnosis  been in a national newspaper - the People, and a few magazines and on local radio and on Embarrassing Bodies ( channel 4) .

I am sure most who saw me on any of those thought that I was somehow an attention seeker who just wanted to be on the media?

Nothing could be further from the truth.

We have lived for 25 years a VERY quiet life in a smallholding in Cornwall, and that is how we want to live. If it was not for HIV we would never have been known to anyone.
But when I was diagnosed HIV I found it was like joining a secret club. That so many in the UK, and even in Cornwall young and over 40+ have HIV, and the media seems to have let HIV drop through their radar and of no interest,  as if it is only something that is happening in Africa etc!!

Anyway, as to our story.

We did not think we were at risk? And I certainly did not!

Why would I? As I have been married to my husband for 20+ years and faithful to one man, my husband, for over 30 years.

But sadly my husband made a brief - very brief - 'mistake' with a woman when he was approx 50 years old about 8 years ago, acquired HIV and unknown to me, gave it to me.

He sadly had progressed to AIDs before he was diagnosed ( and I already had symptoms and was also near/verging on AIDs) as he never thought one incident in over 25 years of marriage and 30 years of being with me, one person, would lead to HIV.

So he never told me he was unfaithful - out of shame and guilt, and the hope that he could forget his one transgression, not because his aim was he wanted to deceive me, but out of shame hat he had ever done this.

So while it is no excuse that I also did not protect myself as I should have been more aware - as should we all!!

As I had reached the menopause I had long stopped using contraception and while I was/and am  very aware of STIs having worked as a Youth worker with one of my roles sexual and sexual health awareness with young people, I simply did not think I needed to use protection with my husband.

Therefore I, like many women of all ages, I did not have the information to know to protect myself so now at 57 I find I am also HIV positive.

HIV may now be controllable with medication, medication which we are both on, but this does not make it any easier at all.

The medication does have side effects. For me life changing side effects for my husband less but still interferes with his quality of life.

And as infection starting when you are over 50 is a comparatively new thing no one really knows what the prognosis is in the long term for the over 50s. When you are over 50 your immune system is not as good as it is when you are younger, also the Antiretrovaral medications are highly toxic and known to damage liver, heart and kidneys and if you have lived till your 50s theses organs have taken a battering even if you are not a drinker etc - and we are not - and ARVs only delay at best the onset of AIDs and al on ARVs or with HIV are 70% more prone to many cancers than the general population so for us it is a life sentence and a waiting game. We want to survive until our young 21 year old daughter is at least 30, to see her set up, that is our only ambition now.

And HIV is STILL a highly stigmatized illness - I can not share what I am going thorough with other women my age in the same way I may have if I had another illness breast or cervical cancer for instance and this isolates me and makes me feel so very alone.

And for no one is living with HIV something anyone would ever want.

Nor is living and coping with a stigmatized illness such as HIV how we would wish to lead the short years of active life we all  have left when in our 50s.

My message to the over 50s or even the over 45s is:

Don't join us?
Be careful, use protection whoever your sexual partner is. And if you have reason to feel you have ever taken a risk at all.........................

Get TESTED!
If you are 45, 50, or even 80, get tested
As HIV can be treated and controlled and you do not want to get to the stage of AIDs like my husband and I before you get that treatment.