Bloomsbury Patient Network

Living with History

Living with History

STAMP OUT AIDS, KILL A QUEER read the car sticker… GAY PLAGUE screamed the headlines… God’s Punishment…Burials in concrete …Losing your job….Hounded out of your home….Shit through the letter box…Being refused burial… Being treated as a pariah…. You can get it from kissing…You can get it from tears…You can get it from touching. The media had a field day!

come-so-far

Living through the 1980s was not a pleasant experience. More like a witch hunt. The hunt for a scapegoat was on. You were the hunted. A whole generation grew up scarred by the images of volcanoes and tomb stones and the sound of John Hurt’s voice warning us of Armageddon! This was the period when HIV was demonised. It is still affecting us today.

My Life Partner (Robert, 32, architect) was diagnosed with HTLV3 in 1982. When the test was introduced in 1984 I tested positive, and the doctor said: “Well, we’re not surprised are we?” He gave me 2 years to live. I was going to die. That was it. There was nothing the doctors could do. No support networks, no counselling, no advice. You tried to live your life as best you could and you fought – how you fought! – prejudice, ignorance, and for your rights. You started support groups and fund-raised and tried to raise awareness.

Doctors and dentists refused to treat you. They refused to deliver meals to your hospital bedside. Cleaners refused to clean the room to which you were banished because you were not wanted on the ward. You were required to wear barrier nursing – to cover up from head to foot – merely to visit a loved one.

My partner and I explored alternative therapies. We tried yoga, meditation, a shaman advised drinking your own urine, and we imported anything that was rumoured to work from the US – including food preservatives, relaxation and visualisation tapes. But acupuncturists refused to treat you, world famous cancer clinics refused to help you and it was difficult to find a sympathetic ear. During a month long stay in hospital I couldn’t find a physiotherapist to visit my partner. Everything rested in the hands of a dedicated few nurses, doctors, lovers and friends.

Telling people was difficult. I went around with information leaflets in my bag. I had to be prepared to spend a whole evening educating friends, allowing them to ask questions (“are the children at risk?”), or ring me at any time of the day or night (“I can’t sleep through worry”), or explain that they were safe when visiting the hospital (“can I catch it from being in the same room?”). Some days you wanted to scream. And when Robert was well enough to go back to work, we bought mugs for every employee with their name on! Extraordinarily, I think we were lucky and suffered little of the rejection, stigma, prejudice and violence that we heard about daily.

The advice given was minimal (“wash down every surface in the home with bleach every day”). There was no medication and all your doctor could do was treat each opportunistic infection as it arose. Friends and colleagues were dying in their hundreds and there was nothing anyone could do.

Every time you went out you saw the AIDS campaign posters. Every time you switched on the TV you saw the ads. Yes, this was you they were talking about. You were this huge threat to mankind. You were the plague. Paranoia? Why is that person staring on the tube? Do they suspect? Does it show?

In this way Robert and I battled on…. for five years. We carried on working and living as normal a life as possible in between the constant visits to doctors and month-long stays in hospital. I tested positive in 1984 but my focus and energy was so focussed on supporting Robert that I never even noted it in my diary.

Robert gradually lost weight, lost his appetite and cancers appeared over his body. Stomach upsets were daily, as were night sweats. We had 4 changes of sheets. He lost the feeling in his hands and feet; lost all strength and muscle, became anaemic, yellow skinned and hollow eyed. Stays in hospital became longer and there were periods of unconsciousness and raging fevers.

His last Christmas, Robert was allowed home to be with my family and our friends. More than anything else he wanted to have a bath in his own bathroom – with candles, bath oils and super soft towels. By this time he weighed so little I was able to carry him up four flights of stairs in my arms. He knew he was dying. He derived comfort from watching our young nephew crawling around on the floor. A new life for old.

Robert passed away on New Year’s eve 86/87.

Hundreds of people came to his funeral – doctors, nurses, friends, colleagues, and a tutor from his old university in South Africa. But not one of his family!

Having spent the last five years caring for the person I loved, I was exhausted and fell to pieces. Our friends were there to support me but the feeling of loss and emptiness was overwhelming. I cried for days. I think as much at the sudden realisation that this could all happen to me as for my recent loss. My emptiness was filled with fear.

I turned to Robert’s counsellor for help. I was the first partner to make this request. Somehow gay partners were not real partners so they didn’t need bereavement counselling. But she was brilliant and supportive. We embarked on a journey of discovery and recovery. It so helped to talk, be taken seriously, express my loss and fear of the future.

And then I got involved in fundraising … Then in helping to organise a support group…We signed our Living Wills… We joined drug trials – and cried when the results were so appallingly negative. We educated and fought for benefits and rights, at a time when gay partners had no rights whatsoever. We started charities, support groups, political pressure groups; went on marches, lobbied, started financial and legal advice centres, drop in centres, specialist wards with sympathetic nurses and doctors… It took years, and years, and years but finally civil partnership was introduced and protection under the law for those living with HIV.

But the road was far from smooth. People continued to die and I lost my subsequent partner, Michael (30), just as anti-retroviral therapy was being introduced.

1996 was the turning point. The viral load test was introduced. (I had an undetectable viral load – good news after so many years). Anti-retroviral therapy was introduced. HIV became a manageable chronic disease rather than a death sentence. The more people who took therapy, the fewer people died. The newly diagnosed were suddenly being told they had a future.

In the early days of medication, yes, there were side effects but the modern generation of drugs have few side effects and most people are stable within a short period of time. In a matter of weeks a viral load of millions can now become undetectable. How lucky we are to have come so far in so little time.

Year after year I just kept on going. I turned out to be an exception to the rule. I had been given 2 years to live in 1984 and I managed to keep going without medication until 2003. I have now been living with the virus for 27 years and I am fit, healthy, in work and have a future. But…

I get angry – not because so many friends and colleagues wasted away in the middle of a battle zone – but because so many people were disempowered and treated as victims because no-one knew what to do with the HIV wounded. I get angry because despite the huge advances in medicine, treatment and care we are still surrounded by ignorance, stigma, fear and discrimination. The past hinders and dictates the present. We are disempowered by out-dated imagery, misinformation, urban myths about side effects and a media that cannot grasp the new realities of HIV.

I get angry that HIV is not news anymore – because it is not apocalyptic enough. The tragic consequences of HIV that we see on TV – somewhere else, in a foreign land – are happening in smaller, subtler ways under our very noses, in our own back yard, to men, women, children and babies. But few want to know…. or accept that the virus is here in our midst. Fear and ignorance breed stigma and discrimination. When is it going to change?

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Richard, London

Thank you for sharing your time, knowledge and experience and courage with us!

Mohammed, Westminster

Thanks for giving me back my life and thanks for giving me hope. From now on I will be seeing my life differently. Thanks for everything over the last three weeks it has been a great course.

Ola, 43, Bow

May I take this opportunity to thank you for your time, support and more importantly faith that we can embrace our HIV status with a degree of confidence and pride

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