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Julie Musonda

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I Wish the Public Could Truly Understand What HIV is All About

Posted: 01/12/11 14:40

This didn't happen to middle class women in their 40s! It happened to drug users, other people and men. Not women who can count all the sexual partners they had in their lifetime on one hand. How wrong I was, I look back now with a naivety of a preschool child.

My initial reactions were one of denial. Surely they've got my blood test mixed up with someone else? Then I moved into 'coping' mode, which when I think back were my crazy days! I carried spray bleach everywhere to 'kill' the virus in my blood. Little did I know that the virus dies within seconds of leaving the body. I even went round the funeral parlours getting quotes for my funeral. Looking back I was a crazy women with no logic in anything I was doing and certainly never dealt with my feelings. A friend recently compared those initial days with 'holding a ball underwater'. That's a great analogy as you use all your energy in trying not to deal with the fears and emotions that are really unhealthy.

The only person who suffers is the person who's in denial. I had a couple of years of those feelings. I thought I could handle this on my own, but the truth is I was out of my depth. Out of my comfort zone and my mind was out of control.

The biggest leap forward for me was the day I could look in the mirror and not only liked what I saw but be able to say to that person, who I didn't recognise, I'm living with HIV. That took me two years. Two years of giving up on life. Two years of crazy choices. And two years of waiting to die!

It was only at this point in my life that I was able to 'hear' and understand what my poor long suffering healthcare team had been telling me for two years! It was one of those lightbulb moments when I realised I wasn't going to die. That day I got up and decided that today was going to be the first day of the rest of my life. I spent two years studying everything I could find about HIV, some good some bad, but all knowledge that I never thought for one second that I would be able to share with the rest of the world!

I have been extremely fortunate in the disclosure of my blood borne virus. I initially disclosed to very few, a select few that needed to know. A few that I would come to rely on, seek solitude from a have absolute faith in. Being a 40 something, white, middle class, heterosexual female with a reasonably successful life it was never 'expected' of me. I have not noticeably suffered any discrimination but I am a strong woman and don't suffer fools gladly! I'm not saying I haven't had any discrimination because of my HIV status, I'm just saying I haven't recognised any! I am strong enough, and knowledgable, to challenge anyone who cares to show ignorance.

I was talking to a friend yesterday and comparing lives and I realised that none of the issues I have in life have nothing to do with my HIV status. It's all the other normal stuff that affect each and everyone of us in everyday life and none of it could I attribute to a tiny virus thats in my blood. One that I have to live with for the rest of my life so I can let it destroy me or use it to my advantage and get on with my destiny in life.

I believe everything in life happens for a reason and if I wasn't living with HIV then I would not of come across some truly amazing people, people who I would never have come into contact with, and those are my 'adopted' family. Each one very different, but each one a part of my life's jigsaw and each one that I love intensely!

I also owe my life to the advances in medication and the fantastic people who devote their lives to research. Without those people I may not be as lucky as I am. If it wasn't for my work, the only difference HIV makes to my life is the one tablet that I take every night. I've only been on meds for two years but I am lucky enough to live in the right postcode area to receive the best treatment in the world. I am extremely grateful to my healthcare team who have suffered at the end of my somewhat bizarre questions. More so in the early days before I could listen to what they told me. Sorry guys! I am just thankful that the advances mean that the treatment fits in with my life, keeps me well and let's me lead a normal life. My life is fulfilling, busy, amazing and filled with love and I wouldn't swap my life just now and I thank those who have supported me, laughed with me and cried with me over the past six years.

Unfortunately because HIV is only in the media in either a negative or sensational way, and even that presence is rare, the general public think that HIV has gone away! They think it's something that happens to someone else in another country miles fro the UK. If that were the truth then 86,000 people living with HIV in the UK would not be in the situation they find themselves in today.

The one wish I have right now is that the public would be able understand what HIV is all about, then and only then can those living with HIV be able to live one life and one life only without fear, secrets or a dual existence.