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Last Updated: Wednesday, 3 December, 2003, 12:13 GMT
'I wanted to curl up and not exist'

As part of a BBC series on Aids, people living with HIV from around the world tell their own stories in their own words.


Lincoln says stigma makes it hard to live without the occasional lie
Australian Lincoln Andrews describes how he has re-gained his sense of self since first being diagnosed with HIV as a 23-year-old in the late 1980s.

I was diagnosed with HIV in 1988 a little after my partner, then 30, was diagnosed.

He was the first for me in regards to penetrative sex. I had met the right person, who I wanted to be with.

It was a choice I made out of ignorance. HIV did not relate to people in love and in relationships.

We separated several months after diagnosis. I guess back then for me, the pain of watching him die would have been too much.

I decided I would never have sex again and I left to travel the world to have incredible adventures before I was to die.

During my travels I met an American reporter who was to give me self-esteem back by showing me it was OK to be intimate while having HIV.

Up until that time I had scrubbed myself frantically in the shower with soap every time I washed.

Learning to survive

On returning home I turned to a scene that I had previously turned my back on.

I managed a disastrous eight-year relationship with a guy who was incredibly unfaithful. I ignored this because I thought no-one else would want a relationship with an HIV-positive person.

YOUR STORIES
I was diagnosed with HIV in January 1991 at the age of twenty five. Twelve years later I am more surprised than anyone to still be here
Jon, England

My status gave him the reason and support from others to do what he did.

In 1997 I was diagnosed with Large-Celled Non-Hodgkins Lymphoma. During my time in hospital I decided I had to survive and be independent.

I got my driving licence when suffering side effects from radiation therapy. I went through Sydney University to complete a graduate diploma and a masters degree before I was equipped enough to leave my relationship, my home and my comfort zone.

I began my new career in my new life by throwing up in the morning and aching from a badly bloated stomach because I started a drug trial a week before.

Luckily for me, the doctors and professors I see are intelligent humane people. Australia's health research is very progressive - for example the DNA test that identified my immunity to most HIV drugs on the market.

Access to HIV drugs in Australia is easy and I was able to sign up for plenty of drug trials.

Stigma

Having HIV, my sex life and personal life has suffered the most and I am sad it is all I have known during my adult sexual life.

In a society based on quick discreet and anonymous sexual meetings, the internet chat rooms are full of profiles stating HIV/Aids free, STD-free, or any other description that separates them from people like me.

I want to have the freedom to exist and to experience love in my life shaped by my own adventures of love, travel and friendship, not by phobias and fear
Some specific websites are full of gay, bi-curious or straight, married guys wanting to be bare-backed - to have sex without a condom.

I have never forgotten my US journalist who reached out to me at a time when I wanted to curl up and not exist when far away from my country.

Stigma makes it impossible for people like me to live a life without lying.

I want to have the freedom to exist and to experience love in my life, shaped by my own adventures of love, travel and friendship, not by phobias and fear.

Travel restrictions

Having HIV has also meant that I have not been able to live in a free world.

Before my diagnosis I was building a promising career that would have allowed me to work pretty much globally.

Due to laws, policies and attitudes in various countries I cannot do this. I rely on short-term trips and have to disguise my pills as vitamins to pass through immigration.

Sometimes I take drug-free holidays with the risk of becoming immune to my pills. For me the experience of adventure is far better than any medical treatment.

At the moment I have made a few new friends since my recent return home to Melbourne from Sydney. I have not yet disclosed my HIV status to them.

I am allowing my mind a brief encounter to be a HIV-negative person. I see this is the true face of HIV in 2003.

My pain is not HIV, but that I may some day die without ever having experienced my full humanity.


The following comments reflect the balance of views we received:

Your story is an inspiration, I work in a HIV research department and it puts a purpose to our work
Anthea, Liverpool

Your story is an inspiration, I work in a HIV research department and it puts a purpose to our work. You obviously are dedicated to eradicating the ignorance towards the illness and this is something we must all work towards. Life is a gift and you're right - live it!
Anthea, Liverpool, England

Always good to hear someone with positive mental attitude. I lost my partner a couple of years from HIV - the worst thing for him was not the extreme physical pain of his various illnesses but the pain of dying unfulfilled. That he had not made his true mark on the world or experienced everything that it could offer. I said to him then and believe it more every day - my life would not have been so enriched had it not been for the total love that we shared together. Keep on fighting Lincoln and make your mark!
Ian, Brighton, UK

Hi Lincoln, You are one in a million who can speak out and share the world you are facing with other people around the world. Keep up with the same spirit and live life to the fullest. Take care and be strong.
Hilda Adams, Tanzania, Zanzibar

HIV/Aids is no longer an issue just for gay men
James, London

Thank you Lincoln for telling it like it really is. It's a worrying fact that many people today, young and old, have scant regard for the life altering effect of HIV. And this is no longer an issue just for gay men. A good friend of mine has recently been diagnosed with HIV. He is healthy and probably has at least ten years before he will need to begin treatment. The therapy currently available means that he may live just as long as anyone else. This is good news indeed, but people must be made aware of just how much HIV will still change one's life. For my friend, a relationship, a normal sex life and even foreign travel now range between difficult and impossible. Anyone who thinks this is a disease that can easily be lived with is very much deluded.
James, London, UK

I have been in a relationship for a little over 3 years now with an HIV positive person. She is a really wonderful person. I have learned a lot about myself and the selfish way of life that I was living. My hat off to you Lincoln!
Archie Ford, Bremen, Germany

Hello Lincoln, you are a great and strong man. Keep it up. My advise to you is "to be HIV positive is not the end of life, don't give up, just follow the doctor's instructions and take care of yourself, you'll live a long life physically and mentally fit.
Edith Morris Modisaotsile, Serowe, Botswana

Think of yourself as a pioneer Lincoln
Jim, Australia

Think of yourself as a pioneer Lincoln. Blazing a trail through bigotry for present and future generations. I am living proof that times are changing; I'm heterosexual, raised in an ultra-conservative environment in country Australia. I still live here but don't have the views that surrounded me growing up. It's all about education. You are right in the middle of it - a pioneer.
Jim, Shepparton, Australia

Hey Lincoln - I wanted to thank you for helping me appreciate many things I take for granted - my health, travel, and independence. You have so much to share and give to the world. Best wishes!
Bobby, Boston, Massachusetts, USA

I just want to commend you on your general attitude about living with HIV. Travelling the world and living life the best we can while we're here are things that all people should do. The fact that you are doing these things with your current struggle is inspirational. Best of luck for the future. Cheers.
Mark, Maine, USA

Keep exploring!
James Kidd, London

Hi Lincoln. Just wanted to say thanks. Really enjoyed reading your thoughts and feelings. Great to see you are still exploring and seeing all the beautiful and wondrous places the world has to offer. Very good for the soul! Keep exploring!
James Kidd, London

Lincoln, you are an incredibly strong person. Just remember that not everyone will treat you like an outcast. Trust your friends and family - they might just surprise you. You are not a disease but a person.
Michelle, Chalfont, England

Hey man. I understand your situation. I think you should enjoy your life. I once saw a movie. It was about a man diagnosed with cancer. But he was happy and told a friend "Life is made up of millions of seconds and I'm going to enjoy them all! Death is just one second and I wont bother about it. Let it come when it will. I'm not afraid! Cause after that second. Well I'm not there, so what's the problem" Enjoy your life Lincoln!
Avinash, India.

The stigma that society has with regards to HIV is so incredibly damaging
Tony, London/Melbourne

Lincoln, what you have said is so moving and I congratulate your strength, honesty, determination and depth of character that has allowed you to express your feelings and motivation so eloquently. I am HIV negative and was going out with someone who was HIV positive for about 2 and a half years and although I wasn't bothered about it, many of my friends were. The stigma that society has with regards to HIV is so incredibly damaging. However, with education, new drugs and people like yourself, who offer us a glimpse into your world, you can also take hope that there are people out there (and the number is growing) that will see you as a source of inspiration, rather than an irrational source of fear.
Tony, London/Melbourne

I am Lincoln's younger sister. Being a nurse I have an understanding of illnesses and have been by my brother's side ever since he was diagnosed with HIV. I know the pain it has caused him and myself throughout the years and have grown as a person due to this. I don't think it is just the HIV that hurts him; it is the ignorance of society that isolates him. I try to help him but this isn't the sort of help he needs. I have watched him suffer as he has tried to pick up the emotional pieces just to survive. The thing that makes me really angry is I have seen him get knocked down over and over but he picks himself up again and moves on in search of another adventure. I am shocked at how uneducated frightened people either laugh at HIV or say that he deserves it, nobody deserves this. My brother has shown me the type of people on the internet, lying to themselves and others then I look at my brother who is honest and it makes me wonder where our society is at. I would like to say I am proud of all of those people who wrote their stories on this web site and for sharing their experiences.
Meaghan, Australia

Hi Lincoln. What a great story. Your story hits home for all my friends who are no longer here. You have done well. Take care.
Brian, Sydney, Australia





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