hello gorgeous - English edition #1 - fall 2013

english edition

honest about HIV for & by you

HELLO HIV

HEALTH

THE HIV INDUSTRY COMFORT FOOD

GORGEOUS THINGS BEDTIME STORIES TRAVEL HIV HERO

COLUMNS DOUBLE INTERVIEW

HIV + TALENT

GORGEOUS CREATURES

COMICAL JOKE

YOU DON’T WALK ALONE

YOUR MEDICAL TEAM IS YOUR BEST PARTNER IN THE JOURNEY TO BEING HEALTHIER WITH HIV. IT’S UP TO YOU TO:

COMMUNICATE

Speak up — don’t just listen — during your doctor appointments

LEARN

Find out the basics about HIV so you can ask the right questions and better understand the answers

SHARE

If you’re feeling side effects, tell your doctor. Only you know how you are feeling and your doctor may be able to help you

MSD, Postbus 581, 2003 PC Haarlem, www.msd.nl Copyright © 2010 Merck Sharp & Dohme Corp., a subsidiary of Merck & Co., Inc., Whitehouse Station, NJ, USA. All rights reserved.

INFC-1033773-0028

Message from the editor

open & honest

A couple of years ago, a group of us met to brainstorm.

By then, thirty years had passed since Aids claimed its first victim. Yet despite massive medical advances, people’s ideas about HIV were still dominated by images from the dark, early days of the crisis.

The public’s lack of understanding is kept in place by a lack of visibility. Many people with HIV keep their condition a secret, fearing hostile reactions from those around them. It’s understandable that we get angry at being stigmatised, but we can’t do much to change attitudes as long as we remain unseen.

If we want to rid the world of stigma, it’s up to us to take the first step.

That’s why my friends and I decided to create a glossy magazine about HIV, which would be produced by volunteers and distributed mainly free of charge through HIV treatment centres. The magazine would tell the stories of various people with HIV and be filled with editorials, columns, lifestyle items and the latest information about living with HIV. It would be beautifully designed, bold, optimistic, proud and sexy; even its name would be empowering. ‘Because we’re worth it.’ It would be not just for people who live with HIV, but also for those who know anyone with the condition, who are professionally involved with HIV or who simply want to find out more about it.

Now, five issues later, the responses have been overwhelmingly positive. Take the case of Reina for example, a 50-year-old woman who had been living with HIV for 25 years; spurred on by our magazine, she ‘came out’ to her daughter. Or Pjotr, a 21-year-old man, newly diagnosed and depressed by all that he’d read about living with HIV – until he picked up a copy of hello gorgeous.

We are delighted to present you with our first English edition, a digital compilation of translated articles selected from the first four issues of the printed Dutch magazine. These include the stories of Lucy, Helen, Raoul and Rick, travel advice for people with HIV, a comfort-food recipe and our very own comic heroine, Joke van Soest.

Enjoy!

Leo Schenk leo@hellogorgeous.nl

hello gorgeous 1

CREDITS Coverphoto by Henri Blommers

magazine about HIV for&&door by you voor jou

EDITOR IN CHIEF Leo Schenk

ContentS

GRAPHIC DESIGN Stefan Silvestri Adrian Silvestri www.gebr.silvestri.nl SUBEDITORS Hannah Jansen Durk Doornbos

Message from the editor

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gorgeous things

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ART EDITOR Henri Blommers HELLO GORGEOUS TEAM Andrea Bandelli, Henri Blommers, Durk Doornbos, Henk Hageman,

Hiv HeRO

Spencer Cox

Column

Mirjam

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HIV+ Talent

Eric Kollen

16

Health

Stopping smoking for good

18

Bedtime stories

Lucy

26

Column

Bertus

29

Bedtime stories

Markus and Bram

36

Travel

Be well prepared

40

Comfort Food

Sigrid

50

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Hannah Jansen, Leo Schenk, Adrian Silvestri, Stefan Silvestri, Carsten Lund Thomsen and Sylvia Vissers TRANSLATIONS Allen Gibson Tom Johnston www.johnston.nl ADVERTISING SALES

Robert Witteman robert@hellogorgeous.nl SUBSCRIPTIONS Abonnementenland, Heemskerk bladenbox@aboland.nl WEBSITE Twelve Trains www.twelvetrains.nl The paper version of this magazine is published four times a year by Stichting hello gorgeous. www.hellogorgeous.nl info@hellogorgeous.nl This is a special online English edition, comprising articles selected from previous issues of hello gorgeous.

Sites & Services

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Comical Joke

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Š January, 2014 No part of this publication may be reproduced in any form whatsoever without the prior written consent of the publisher.

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HELLO HIV

‘I immediately sent everyone a message saying that I had HIV.’ 10

The HIV industry

HIV nurse Loek also has HIV. 22

Gorgeous creatures

Presenting...

An ode to our beloved pets.

30

Double Interview

Veteran versus rookie.

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gorgeous things Photography by Harrie the Photographer

Plastic fantastic As the days grow shorter, nothing brightens up a room like a bunch of flowers.

And what better way to banish the winter blues than a bunch of roses or tulips, displayed in an eye-catching vase? This ingenious plastic vase can simply be folded up and packed away when it’s empty, making it the perfect gift for a loved one – or a special treat for yourself!

Hope Forever Blossoming vases

by D-Bros 2 vases for €17.50 www.huyss.nl

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You’ve been framed Nowadays we normally just look at our photos on screen – we rarely ever print them, never mind frame them. But there’s no finer way to remember a loved one than with a framed photo. Available in various sizes, these frames are made from reclaimed wood collected by homeless people in South Africa. What’s more, a portion of the profits goes to help a shelter in Cape Town.

Frames by Luna Designs www.lunadesigns.nl

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gorgeous things

Let there be light Stephan Gentsch was one of the artists who donated work to the auction that helped fund the launch of hello gorgeous at the end of 2012. His donation was a lamp, similar to this one. Stephan’s beautiful designs are reminiscent of illuminated sea creatures, captured in freeze frame. A range of different sizes and types is available, including table lamps as well as wall- and ceiling-mounted models.

Lamps by Adicto Lightstyle www.adicto.de

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Make a splash We all know that antiretroviral drugs reduce the amount of virus in our blood to undetectable levels. This changes how we look at our blood too.

These playfully designed cushions incorporate ‘blood stains’ with a splash of humour. Lay your head down for a good night’s sleep and you’ll be fresh and full of energy in the morning!

Cushions by Studio Job www.studiojob.be

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HIV hero Written by Leo Schenk Translated by Tom Johnston Photography by Walter Kurtz

thought he was brilliant since he often knew more than the scientists.

‘Always hold on to joy.’

Cox was one of the first to break the silence surrounding the psychological scars that so many gay men carried with them after the horrors of the Aids years. In 2006 he cofounded the Medius Institute, a think tank that focused on the emotional health of gay men. The institute published several valuable reports, including The Legacy of the Past: Gay Men in Mid-Life and the Impact of HIV/Aids, but was unable to secure funding to keep itself going.

After a life dedicated to Aids activism and to improving the emotional health of gay men, HIV hero Spencer Cox died of the consequences of Aids on 18 December 2012, at the age of 44.

His sorrow was his sword Spencer Cox (1968–2012) was not even 20 years old when he joined the pressure group ACT UP in 1987.

In the early ’90s he was one of the founders of the Treatment Action Group, and he took part in trials of new types of HIV medication.

People he worked with 8 hello gorgeous

Cox had some demons of his own. He started using crystal meth and ended up moving back to Atlanta to live with his mother in order to kick his habit. In 2012 he returned to New York, where he helped make a documentary called How to Survive a Plague about

the ACT UP movement that was so dear to him.

On 12 December 2012, he was admitted to hospital, where he died the following week of Aids-related complications. His death was unexpected, and it’s anybody’s guess as to how it could have happened so suddenly. Perhaps it had to do with the fact that he had stopped taking his HIV medication half a year earlier. Cox had become resistant to a lot of different HIV drugs, and friends had noticed that he had grown tired of taking his pills – the very medication he had fought so hard for.

He also wrote for the blog of the American HIV maga-

Legacy of the Past Cox wrote this report in 2006, arguing for more psychosocial support for gay men who had survived the Aids crisis. In his view, many men had witnessed and experienced so much misery that they suffered from post-traumatic stress disorder. That, in turn, opened them up to various other problems, such as anxiety disorders and drug abuse. You can download the report as a PDF file from www.treatmentactiongroup.org (search for ‘The Legacy of the Past’). zine POZ. In his last piece, he addressed the younger generation of activists: ‘If I have one piece of advice for young, aspiring activists, it is to always hold on to the joy, always make it fun. If you lose that, you have lost the whole battle.’

How to Survive a Plague?

This documentary about the early days of Aids activism features a number of activists who describe how their anger and sadness fuelled their struggle.

It was nominated for an Oscar for best documentary feature in 2013. The American television network ABC has plans to make a miniseries based on it. The documentary is available on DVD. hello gorgeous 9

HELLO HIV Written by Leo Schenk Translated by Tom Johnston Photography by Linelle Deunk

‘I’m still young,’ she says, laughing, when I ask her age. She laughs often during the interview. Helen (aged 47) comes from Mbarara, a town in western Uganda, and her story begins in 2001.

She currently lives in England, so I talk to her via Skype. In her Flemish accent she tells me about the period in which she was told of her HIV diagnosis. ‘Back then I was working for an international company and had to be in France and Belgium for my work.

While I was there I started having problems with my foot again. It was a condition that I’d already had for ten years and

She reacted with disbelief.

‘I was married in 1993. Before you can get married in Uganda you have to do an HIV test. We were both negative. And if you get pregnant, you need to do another test. So when I got pregnant, I got tested again, and once again it was negative.

When you’re about to give birth, you need to do yet another HIV test to make sure your child doesn’t have HIV. Once again: negative.’ Not long afterwards, her hus-

‘I give people for which I’d regularly been operated on.’ She went to a clinic in Brussels and three weeks later she got a telephone call from the doctor who was treating her. There was a problem and she needed to go see him again.

In the hospital he told her that she had HIV. 10 hello gorgeous

band died after an accident and Helen says that she hasn’t had sex since then.

‘So there was no reason for me to think I could have HIV. That’s why I asked the doctor in Brussels to do another test.’ That test came back positive as well, but Helen still simply couldn’t believe it.

hope’ hello gorgeous 11

‘I immediately sent everyone a message saying that I had HIV.’

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HELLO HIV A fortunate mistake ‘I called Miriam, a good friend of mine in Uganda who was a doctor. She knew my history and also couldn’t believe that I could be HIV positive. She asked me why the doctor had tested me for HIV without consulting me first. “Is it because you come from Uganda? Does he think everyone in Africa has HIV? He should test you again! And when he has the results, you both need to call me.”’

Some days later, she was sitting in the examining room with the doctor, who was talking on the phone with her friend.

‘I didn’t understand the medical jargon they were using but I heard them mentioning CD4 and viral load. Then I got Miriam on the line.’

Miriam confirmed what the doctor had told her before. Helen had HIV and – considering how high her viral load was – had probably had it for a long time.

‘The doctor was wrong to have tested me without my consent of course, but I call that a fortunate mistake. I was never sick and probably would never have thought to get tested.

Through the doctor’s mistake, I found out that I had already had HIV for quite some time and that it was high time for me to start the treatment.’

If she didn’t get it via sex, how does Helen think she became infected? ‘That’s what I asked the doctor, too. He had worked in Africa and knew that the nurses there regularly reused materials when tending

wounds without sterilising them properly first. He figured I had probably got HIV while the operation wounds on my foot were being nursed.’

Still distressed from the conversation with Miriam and her doctor, she decided to inform her friends. ‘I immediately sent everyone in my address book a message, saying that I had HIV and asking them to pray for me. Right away I got a call from my sister. “Helen, I see that you just sent that mail to everyone…. How could you do that? I realise they are your friends, but not everyone has to know about this.” Luckily, so far no one has ever been judgemental. I decided to wait a while before telling my parents. I figured the shock would give them both a heart attack.’

Helen also has a son, Tumukunde, who was seven when she received her HIV diagnosis. She had asked her parents to care for him once she had decided to stay in Belgium. ‘I didn’t tell him then either. He was still too young to understand it all.’

Homeless Miriam had told her that HIV medication was still not always available in Uganda. Moreover, Helen’s immune system had become so weak that she had a greater chance of getting other, potentially fatal, infectious diseases.

Helen had to choose: either go back to Uganda and eventually die from the effects of Aids, or stay in Belgium, leaving her family behind in Uganda.

It was the most difficult

choice she had ever had to make. She chose to remain in Belgium. ‘I told Tumukunde that it could be five or more years before I saw him again. But when we did see each other again, I would tell him why I never went back to Uganda as planned.’

After a couple of months, Helen had run out of money and ended up on the street. She would often spend her days in the library, and in the evenings she would go to the Central Railway Station to spend the night. She looked for an HIV organisation that might be able to help her and eventually ended up at Sensoa in Antwerp. Within three days, the people at that organisation managed to find a shelter for her. When she moved into a studio of her own a little while later, Antwerp became her home base.

She learned Flemish and started volunteering at the Institute of Tropical Medicine, where she was eventually approached by the Flemish broadcasting company VRT. They wanted to make a programme about people with HIV and asked her if she wanted to participate. ‘I had to think hard about it. It would mean going public, and I still hadn’t told my parents that I had HIV. On the other hand, I thought it was also important to help motivate other people who are living with HIV.’

CV Name Helen Born in Mbarara, Uganda Known from Hiv+, the Flemish documentary about HIV Works at The Brunswick Centre in Huddersfield (UK) Motto ‘Everything happens for a reason and God never gives you what you cannot handle.’

Courageous She had Tumukunde come to Antwerp in 2006 and the first thing he asked her hello gorgeous 13

HELLO HIV

Hiv+ In 2011, the Flemish broadcasting company VRT broadcast the eight-part documentary series Hiv+. For that programme, they followed five people with HIV in Flanders, including Helen, for an entire year. The documentary makers wanted to break through the taboos surrounding HIV and to encourage open discussion. You can watch clips from the programme on www. een.be/programmes/ hiv+/aflevering-1

when they saw each other again after five years was why she had left him there all that time. Helen sighs deeply as she recalls this.

It took another week before she had gathered the courage to tell him.

‘We were watching a film together on TV about a mother who had cancer.

Everyone in the village where she lived knew of it, except for her own children. My son said he couldn’t understand why she still hadn’t told her children. I asked him if he would want to know if I had a deadly disease, and he said yes, of course.

“If I knew that you were ill, I would be able to care for you.” That’s when I told him that I was HIV positive. At first he couldn’t believe it, but once it had finally got through to him, he had a lot of questions.

Years later, in 2010, I told him about the TV programme about HIV that I wanted to participate in. He said: “You’ll always be my mother. If that’s what you want to do, you should do it.”’

‘It was never my intention to move overseas.’

For the TV programme, she went back to Uganda.

Once she was there, she decided to tell her parents.

‘They were concerned, just like so many other parents are concerned when they hear their child has HIV. But they also thought it was courageous of me to be in the programme. They knew of many people from 14 hello gorgeous

our village who had died of Aids, but no one ever talked about it.’

Helen got a lot of positive reactions after the TV programme. The only negative reactions came from people in the immigrant community in Belgium. ‘They thought that my involvement, as a black woman, would only increase the stigma. People might think: she’s black and has HIV…that figures!’

Homesick Helen now lives and works in the UK. ‘I wasn’t really looking for a new job but I just happened to be searching for ‘HIV job’ on Google and filled in a few applications just for fun.

Not long after that I received an email asking if I was still interested in the job. At first I thought it was spam, but later I thought: how could those people know that I work in the field of HIV?’ She decided to call them and was invited for an interview, after which she was offered the job at the Brunswick Centre in Huddersfield, West-Yorkshire.

‘I have two tasks here.

One is to support people living with HIV. I motivate them and help them cope.

The other is to inform and educate and to promote HIV testing and prevention within the Black African communities. I think it’s a shame that some people only get diagnosed with HIV when it is too late for them. Everyone should get tested. Then, if it turns out you have HIV, you can get treatment. Educating people about HIV is a sort of

consolation to me, to think that someone else won’t have to go through the same thing that I did.’

Doesn’t she miss Belgium?

‘Of course I do! It was never my intention to move overseas in the first place. And yet I ended up in Antwerp and now here in the UK. I still don’t know many people and every time I come home, my three “friends” are waiting there for me: my bed, my television and my computer.

Whenever I’d walk down a street in Antwerp, I’d often see people I know and we would wave to each other. That’s what I miss most: the friends and acquaintances who live in Belgium. In Uganda we used to say that a child who never goes anywhere thinks that home is best, but now that I live in England, I know for sure that my home in Belgium is the very best.’

In the feature HELLO HIV, people describe how it was when they first heard they had HIV.

column Written by Mirjam Schulpen Translated by Allen Gibson Illustration by Henri Blommers and Henk Hageman

My father ‘Be careful who you tell,’ they advised me at the hospital when I was diagnosed with HIV. So for nine months I kept it a secret from my friends and family.

My life seemed to be over, but I couldn’t tell anyone.

How could I ask my parents to carry such a burden?

That first winter, I felt lonely and depressed, and as it wore on, I cried myself to sleep more and more often.

Meeting other women who had HIV changed my life forever. It was as if a crushing weight was lifted from my shoulders. One of them said to me: ‘Imagine that your child had HIV. You’d want to know, wouldn’t you?’ And suddenly I knew that I had to tell my mother and father. I couldn’t keep on living a double life.

I wanted to be myself, particularly with my own parents.

They came to visit me in the spring. My legs trembled as I opened the front door. As soon as they were sitting down, I told them

my terrible news. My mother cried and asked questions. ‘Are you going to die? Can you still have children?’ She also added: ‘Just don’t tell the rest of the family.’

My father had remained silent. After a while he said: ‘Why don’t we take a little walk to the market?’ Outside, he looked at me earnestly and said: ‘Listen carefully. You’re still my daughter and I’m not ashamed of anything.

I don’t give a damn who finds out about this. If you want to have kids, you can count on our support. And have you got one of those red ribbons for me? I’d like to start wearing it right away.’

I gave him a big hug and, as always, he just stood there a little awkwardly. Later I heard from his fellow teachers that he wore that red ribbon on his cardigan for months. Even at school.

Four years ago, at the end of the summer, my father collapsed and died suddenly in the changing room at his gym. He was a vibrant man and just 67 years old. I miss him. hello gorgeous 15

‘I’ve cast off my inhibitions.’

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HIV+ TALENT Written by Thijs Timmermans Translated by Allen Gibson Photography by Jan van Breda

well written and truly erotic. If they are well written, they won’t turn you on; if they do turn you on, they won’t have been well written. I want my stories to succeed on both levels.

‘I need to get turned on by the story I’m working on.

If it doesn’t turn me on, it won’t be a good story, just pornographic pulp. That’s what you write when your only motivation is to earn enough money to pay the rent. It’s a joyless, passionless product.

Eric Kollen (aged 45) used to live on a remote farm in Hungary, where he grew his own food by day and wrote erotic stories at the kitchen table by night.

‘There’s a limit to how many massive cocks you can shove down your readers’ throats, as it were.

There comes a point when they’ll think: that’s enough.

You need to alternate between bold, provocative pornography and witty dialogue, to write down what’s happening in your characters’ heads, and to describe their relationships and the power dynamics between them. Manipulation and deception are what create sexual tension. And the sentences need to flow smoothly. They need to

without actually doing it. That changed when I turned 18: having sex became the whole point of my existence. Nothing else that I did mattered.

‘Then at the age of 27 I was diagnosed with HIV. If it weren’t for that diagnosis, I wouldn’t have written my book. Until then, I had heavily censored my sexual desires. Lots of people who read my book say that they have exactly the same fantasies, but haven’t dared to share them with anyone.

I’ve chaired discussion groups for positive gay men in which we talked very openly about our sexuality and fantasies. I’d never have discovered any of this if I’d still been negative.

‘People grow up feeling uncomfortable about sex.

It starts with all that giggling during sexual education at school, and that embarrassment carries on into adulthood. I don’t blame people for that. But I’ve cast off my inhibitions. A sexual psychologist might say that I’ve dropped my pants and let it all hang out.’

Storyteller ERIC KOLLEN: ‘I was writing short stories by the age of 13. Then I moved on to writing different things: songs, a play, a musical and an opera. But I never really got into writing prose.

‘There are lots stories about sex, but none that are both

have a cadence and a buzz, like an aria being repeated.

You don’t want to be distracted by poor grammar.’

‘As a child I was obsessed with sex. Between the ages of 6 and 18 I spent at least 70 per cent of my time thinking about it,

Part 1 of Eric’s Jongenssprookjes (tales for boys) was published in April 2013, and part 2 went on sale in November 2013.

For more information, go to www.jongenssprookjes.nl. hello gorgeous 17

Health Written by Mariette Hermans Translated by Allen Gibson Photography by Taco Smit

They caused a bit of a stir when they published details of the links between politicians, government officials and tobacco company executives.

But Pauline Dekker and Wanda de Kanter aren’t just lobbyists and activists. They are primarily doctors, and part of their work involves talking to smokers to motivate them to kick the habit.

‘We’ve got nothing against smokers. In fact, we used to be smokers ourselves.’

Anyone can do it Stopping smoking for good

Pauline Dekker and Wanda de Kanter met in Amsterdam, having worked at the VU University Medical Centre and Onze Lieve Vrouwen Gasthuis (OLVG) hospital.

Pauline begins: ‘At the time when we started out as doctors, between 1980 and 1990, lots of young people were dying of Aids. In 1996 antiretroviral drugs became available, allowing people with the virus to live longer.

As lung specialists, we find it particularly sad to see HIV patients die of lung cancer.’

Wanda picks up where her colleague has left off. ‘Smoking can make you very ill.

But that’s in sharp contrast to the image generally portrayed of smokers. All those cigarette adverts featuring healthy, happy, stylish people don’t present a realistic picture.’

Twenty a day There are four million smokers in the Netherlands. Two million of them will die as a result of smoking, half of whom before reaching the age of 65. In the course of their work, Pauline and Wanda were seeing lots of young people die – needlessly, they thought. So in February 2013, in cooperation with investigative journalist Stella Braam and others, they launched the website www.tabaknee.nl (no to tobacco) to speak out against the power wielded by the tobacco industry.

This website, along with the sites www.nederland stopt.nu and www.rook alarm.nl, is part of their extensive strategy to cut smoking and mitigate its consequences. Wanda says: ‘Rookalarm (smoke alarm) warns young people and their parents about how the tobacco industry operates.’ hello gorgeous 18

Pauline Dekker Wanda de Kanter

Health Wanda stresses that the pair have got nothing against smokers. ‘They can’t actually do much about it. Smoking is often seen as a choice, so if it kills you, it’s your own fault. But tobacco is incredibly addictive. Just as addictive as heroin, in

fact. The difference is that heroin users take only one hit a day – not twenty.’

Replacement smokers The two doctors believe that the only moment that smokers have freedom of choice is when they light up their first cigarette. ‘But that’s something you do in puberty,’ Wanda explains, ‘when the brain is incapable of appreciating the longer-term consequences.

And within a couple of weeks, you’re addicted.’

A significant part of the pair’s lobbying work focuses on prevention. ‘The number of smokers in the Netherlands has stayed constant at four million,’ Wanda says. ‘Yet in the meantime people are giving up or dying from health problems associated with smoking. So there

must be new smokers joining the ranks – most of them children. We call these people the replacement smokers.’

Besides their political campaigning, the doctors use a book, audio CD and calendar to motivate people to stop smoking, as well as a dedicated ‘quit smoking’ clinic in Beverwijk.

Both also educate other healthcare professionals on how to talk to smokers to motivate them to quit.

On 1 December 2012, during the ‘Volle Maan’ infotainment event on living with HIV, held at Carré theatre in Amsterdam, they demonstrated one of these talks.

For the occasion, Pauline played the role of the doctor, dressed in a white coat, while Wanda donned an oversized wig to play the patient.

Puckered-up mouth

A step-by-step approach to quitting Patients at the Rode Kruisziekenhuis quit-smoking clinic in Beverwijk are asked to complete an extensive step-by-step plan.

The first step is to read the Dutch book Nederland stopt! Met roken (Holland is quitting smoking), also available as an audio CD. The book explains the physical and psychological aspects of addiction, how cravings vary in strength during the day, and the substances that make cigarettes addictive.

You then look at your own reasons for smoking and describe the benefits of quitting, as well as any

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previous attempts to quit and the problems you encountered. There are also a number of ideas to motivate you, such as: ‘If I stop smoking, I can devote more time to things that give me energy. In time I’ll become a more relaxed, happier person.’

The plan focuses closely on personal smoking patterns. When do you enjoy a cigarette the most? Who do you smoke with and at what time of day? You are also asked to describe in detail your strategy when faced with temptation, who you will tell about your plans to quit, how

you will reward yourself and what you will do to deal with any weight gain that occurs. Finally, you consider the possibility of falling off the wagon and giving in to cravings. What happens if you do end up lighting up another cigarette?

Will you regard your attempt as a lost cause and go out and buy a whole packet? Or will you pick up where you left off, knowing that you’ll have to work harder to resist the cravings next time?

The step-by-step plan can be found (in Dutch) at: www.nederlandstopt.nu.

‘We started by demonstrating the wrong way to do it,’ Pauline explains.

‘There’s no point just saying: “You’ve got to stop”.

But what’s the right way?

Well, why don’t we show you?’

At this point Pauline fastens her white doctor’s coat and sits up straight.

Wanda too slips into character: a single mother with HIV and weak lungs, whose daughter is going through puberty and really should have been told by now about her mother’s HIV. Pauline kicks off the role play. ‘Today I’d like to talk about smoking, is that okay?’ Wanda nods unenthusiastically. When asked why she smokes,

she explains: ‘Smoking is my friend. It’s part of who I am. It helps keep me thin too. Bringing up my daughter alone is stressful. And on top of that I’ve got HIV to deal with.’

‘I understand,’ Pauline says.

‘You smoke because it’s part of your identity and you feel that it makes your life less stressful. I know you don’t want to give it up just like that. But on a scale of zero to ten, how much do you want to stop?’

‘Eight,’ Wanda replies, and Pauline raises her eyebrows.

‘It’s true,’ Wanda insists.

‘It costs me around €2000 a year. And at the same time I’ve got a growing daughter who I need to buy things for. And then there’s the wrinkles. You age faster, particularly when you’re on HIV medication. And smoking makes your mouth pucker up, just like an arsehole.’

Withdrawal symptoms The pair step out of character for a moment. That ‘arsehole’ line got a huge laugh in Carré. ‘I took Pauline by surprise with that one,’ Wanda says. ‘I could see her struggling to stifle the giggles.’ Pauline adds: ‘And then I repeated it in my posh doctor’s voice.

It was hilarious.’

They slip back into their roles, with Pauline as the doctor regularly recapping things for the patient’s benefit, offering assistance, reaffirming the patient’s willpower and helping to make a step-by-step plan to stop. Wanda says: ‘It’s just a matter of holding up a mirror to someone and

empathising with them.’

Pauline explains that people with HIV often experience lots of stress related to their condition. ‘This can lead you into the trap of thinking that smoking helps reduce stress,’ she says. In other words: the idea that smoking calms you down is a myth. ‘In the first place, addiction makes you anxious. That anxiety you feel when you don’t smoke is a withdrawal symptom. The nicotine level in your blood falls and that feels like stress.

So you may think that you calm down when you light up a cigarette, but that’s an illusion. You wouldn’t have had that anxious feeling in the first place if you didn’t smoke.’

As well as offering one-toone help to smokers, providing information to professionals and lobbying against tobacco, the doctors focus on the stigma surrounding smoking-related illnesses and death. Wanda explains: ‘People with lung cancer are often asked if they smoked.

As if it’s their fault. Many people who fall ill as a result of smoking feel a great deal of guilt and shame.

Perhaps it’s similar to the way people regard HIV and unprotected sex. The blame is laid at the door of the individual. We want to move away from the stigma, the notion that “you got what you deserved”. You don’t ask people with cervical cancer if they’ve had lots of sexual partners, do you?’

Grandad

but started again once they were over. I used to hide the truth, like any addict does. Then one day my daughter caught me in the act. For her, the worst thing wasn’t that I was a lung specialist who smoked; it was the fact that I was a mother. But as a smoker,

you twist things around in your head. You know that it’s unhealthy but you say things to yourself like: “well, grandad smoked and he lived to a ripe old age”.’

Quitting isn’t easy. Wanda says: ‘For most people it takes five or six attempts to quit for good. You should read the step-by-step plan in our book, discover the unconscious associations that have developed in your brain, and get help. Because anyone can do it.’ Pauline agrees. ‘Go on, put us out of a job.’

Smoking and HIV A Danish study of 3000 people with HIV showed that 60 per cent of deaths in this group were smoking-related.

Smoking is bad for everyone, but if you are HIV positive, your chance of dying as a result of smoking is three times higher than if you are negative. Researchers have therefore concluded that programmes to help smokers kick the habit should be an integral part of regular HIV healthcare.

Both doctors are ex-smokers. Wanda says: ‘I only gave up for good six years ago. I stopped smoking during my pregnancies, hello gorgeous 21

The HIV industry Written by Wiggert van der Zeijden Translated by Tom Johnston Photography by Henri Blommers

As an HIV nurse, you counsel people with HIV every day.

You know the message in those glossy information folders by heart. But what if you, a professional, become infected yourself? What does that do to your credibility?

How does it affect the decisions you make on the job?

Those are questions that Loek Elsenburg (aged 52) , HIV nurse at both the VU University Medical Center (VUmc) and the Jan van Gooyen Medical Centre, had to ask himself.

control positions in which you make decisions about things but never really see the impact that those have on people.’ It was pure coincidence that Loek began talking with one of the hospital’s HIV nurses in those days.

They spoke about working with people, and Loek mentioned that he had been a buddy in Rotterdam. The HIV nurse told him about how so many people were coming to the clinic. Something clicked: one of those moments in which everything falls into place. Loek was asked if he want to take over one of the HIV-consultation shifts for a while.

Not long afterwards, he was appointed as a fulltime HIV nurse, and he’s been working as such for over eight years now. For the past three years he has also been doing the rapid HIV testing at the Jan van Goyen Medical Centre in Amsterdam. And he is on the board of the Dutch HIV Association (HVN).

‘In my profession, you can’t think of solutions for everything, but you can still help create some sort of

A question of He has a fantastic job, he says, and that’s written all over his face. In 2005 he was still working in a management position at the VUmc. ‘It wasn’t the right place for me. I had one of those remote22 hello gorgeous

order in the chaos. In the sense, I am a confidential advisor for my clients.

I respond according to their needs, I mirror what is on their minds and I share their emotions in a constructive way.’

forgiveness hello gorgeous 23

The HIV industry

Straights

CV Name: Loek Elsenburg Works as: HIV nurse (at VUmc) rapid HIV tester (at Jan van Goyen Medical Centre) Was formerly: buddy for HIV patients Is on the board of: Dutch HIV Association (HVN) Is a trainer with: “Living Positive” (a series of workshops)

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A recurring question facing people with HIV is: should I mention it to others or should I keep it to myself.

Talking about it at home, at work or at school is often seen as a big taboo.

‘So many of my clients are living with a big secret,’ says Loek. ‘A large group doesn’t dare to tell people in their immediate circle that they are HIV positive.

In particular, straight men with HIV often feel lonely as a result of their decision not to talk about it.

Gay men tend to be more explicit when talking amongst each other, maybe also because they have often already gone through a whole coming-out experience. Gays are also better informed. Straight men often want to keep the consultation as short as possible. They’re glad when its over and they can leave.’

That shows just how great the stigma surrounding HIV still is.’

Loek has seen a lot in his work. It’s always hard to have to tell people that they have tested positive for HIV, but the impact of not getting treated is much greater. ‘It’s really a small minority, but some patients find it so hard to accept their HIV status that they simply don’t want to be informed, don’t adhere to the therapy, or even worse, don’t even want to be treated with medication. Good health is theirs for the asking, but they choose not to have it. I have seen people die who could easily have survived, even now.’

By the book

A few years ago, Loek’s own health took a turn for the worse. He paid several visits to his family doctor, but there – as he readily ‘I have seen admits – he wasn’t always completely frank. They people die who discussed his complaints could easily and their potential causes, but not that one particular have survived, possibility. ‘I recognise it in even now.’ my patients and I can see it in my contacts in the scene: the ability to keep someLoek also sees a lot of straight men and women in thing from getting through to you, the tendency to the Jan van Goyen Medical Centre. He administers rapid stick your head in the sand – not wanting to admit HIV tests that show the that you have run risks, results in just 20 minutes. even though you know you ‘People who run a greater have.’ One of Loek’s corisk of getting HIV can also workers finally asked him: take a rapid test at the muShouldn’t you get yourself nicipal health centre (GGD). tested? Loek: ‘That hit me Everyone else is usually referred to their family doc- incredibly hard, of course, but in fact it was exactly tor. Some straight men and women don’t dare do an HIV what I needed.’ test through their doctor but The result was non-negotiaprefer to come to our clinic instead since they feel more ble: Loek was HIV positive.

‘I felt so ashamed of myself,’ anonymous and safer here.

he says. ‘The idea that I, as a professional, couldn’t manage to prevent that from happening to me. That I, an HIV nurse, had become infected felt like a failure.

I had had so many discussions with friends about the importance of accepting your own mistakes. And of course a sense of guilt is also deeply anchored in all the religions that help shape our identities. In the end it came down to the question whether or not I could forgive myself. I’m now very much aware that life is not something you can always just live by the book.’

Not done Now Loek, too, was faced with the question: should I tell others or keep it to myself? By then he had begun taking medication and his health had improved dramatically. He was back to holding HIV consultations just like before. Nevertheless, something had changed, and that had a lot to do with his patients.

‘In a sense, nothing had changed, but more and more I started realising that my patients were sharing their innermost concerns with me and that I somehow felt uncomfortable with that.

More honestly: I felt hypocritical. I insisted on their being open with me, yet I was keeping something i mportant hidden from them.’

‘I insisted on their being open with me, yet I was keeping something important hidden from them.’

came to a decision. Gradually, whenever it was fitting and relevant, I began to share my own story with my clients. That led to really warm, sincere reactions. But it also had an added value: my patients suddenly became discussion partners and were on more of an equal footing. When they come in here, they are often at their wits’ end, so to speak.

In that case, I can tell them about my own anxieties and doubts, but also about the choices I’ve made that have turned out well.

And if I mention that I also didn’t dare tell my family doctor everything, and I mention how ashamed I felt, they really seem to loosen up.’

‘When I mention how ashamed I felt, they really seem to loosen up.’

‘Of course it’s completely not done in a medical context to discuss your own situation with your patients. It’s a hierarchical world in which keeping your private life separate from your work is seen as a mark of professionalism. They refer to that as maintaining a professional distance. There are also real risks to keep in mind. You don’t want patients – who can be quite manipulative – to misuse that information.

And you definitely don’t want the consultation to turn into some sort of peersupport meeting. But even so, I started to feel more of a need to be open about my own status. And I also discussed this with my coworkers and other professionals.’

At their wits’ end This all led to a change that has made him happier in the long run. ‘I finally

Loek now also shares his experiences through workshops and coaching, for instance at HVN and at ACTA, the Academic Centre for Dentistry in Amsterdam. Recently a student asked him: ‘So do you have to teach people about safer sex?’ ‘That question still really makes me feel uncomfortable,’ Loek says.

‘It really hits home. But I’ve also learned important lessons about life, about the power and the benefit of acceptance, about letting go of judgements and preconceived notions. Those are things that every patient has to deal with and I’m happy to be able to share my experiences with them.’

Are you ready for HIV test?

At the Jan van Goyen Medical Centre you can get tested for HIV anonymously. You don’t need a referral from your family doctor. The test takes 20 minutes and you get the results right away. The Jan van Goyen Medical Centre is also an HIV treatment centre where you can get professional counselling if the test result is positive. The centre is unique in that it also offers the test outside of regular office hours.

That means you probably won’t need to take any time off from work.

The HIV-testing clinic is open on Mondays from 5pm to 7.30pm.

The test costs €25 and you will need to pay in cash. People in at-risk groups can also get vaccinated against hepatitis B for free at the centre. They will not test you for any other STIs, however.

You can make an appointment anonymously with the office for Internal Medicine by calling (020) 662 2494.

The clinic is located at Jan van Goyenkade 1 in Amsterdam. hello gorgeous 25

Bedtime Stories Written by Leo Schenk Translated by Allen Gibson Illustrations by Henk Hageman

That’s when I realised that being HIV positive didn’t have to stop me from dating.’

‘My first date after my diagnosis was with a Moroccan guy, a wannabe gangster. I was very insecure and kept thinking about how I should tell him. A close friend advised me not to tell him in my own home, in case he hit me. I didn’t understand.

Why would he want to hit me? That only made me even more anxious.

Lucy,* a native of Ireland, fell in love with Amsterdam during a holiday and decided to move there.

Four years ago, at the age of 34, she was diagnosed with HIV. At first, she felt her dates always had the right to know, but now she thinks it’s up to her to decide if and when she tells them.

‘A few years ago I went through a phase when I didn’t take good care of myself. Besides having a demanding job, I spent lots of time socialising, going to parties, getting drunk and taking drugs. Then I fell ill, so I decided to get tested.

And that’s when I found out I was HIV positive.

‘I was in shock. It had been five years since my last test and I felt obliged to tell all the men I’d had sex with since then. I sat down at my laptop, drew

‘Why would he want to hit me?’

‘When I did tell him, he reacted very well. He said that he wasn’t worried and didn’t care that I had HIV. We always practised safe sex. One time, though, a condom burst, so he had to take PEP. But even then, he remained calm.

‘I stayed with him longer than I should have. He made me feel safe and protected, and I was scared of having to go

Learning to up a spreadsheet with all their names and decided to call each one of them.

I thought only about who I might have infected, not who had infected me.

‘All the men I called responded well. One of them even wanted to start seeing me again.

26 hello gorgeous

through the process of meeting someone new and telling them all over again.’

Paranoid ‘After the scare with the burst condom, I decided to begin taking HIV medi-

respect myself hello gorgeous 27

Mijn seksverhaal Bedtime Stories cation. I had read somewhere that starting treatment early would be good for me. And since it would reduce my viral load to undetectable, it would protect my sexual partners too.

‘At that time I was working for a big company and regularly travelled to Africa on business. I also spent a while living in Tanzania. We’ve got good healthcare and treatment here in Amsterdam. But over there, people are still dying of Aids and afraid to tell anyone about being positive.

‘I had a boyfriend in Tanzania who was paranoid about HIV. He told me: “You’re all crazy in Amsterdam. You all go to those wild parties and you’ll probably all end up getting HIV.” I didn’t have the courage to tell him that I was positive – I was scared that he’d get angry.

‘I had to take my pills every morning with some food. So in the evenings I would hide a cheese sandwich in the bathroom.

When the alarm went off in the mornings, I’d lock myself in there, eat my sandwich and take my pills, and then crawl back into bed. My boyfriend must have smelled those cheese sandwiches on my breath. He probably thought that I had bulimia and that I’d been binging and throwing up.’

Worry ‘From Tanzania I moved on to Zanzibar, where I met a Dutch guy. We would go out, get drunk 28 hello gorgeous

and have wonderful, long conversations. I didn’t tell him that I had HIV either, although we had unprotected sex. I was worried, but we carried on doing it.

‘One evening he told me that he’d had a kidney transplant when he was a child and that if he contracted HIV he’d have to stop taking his kidney medication, as it would interact badly with HIV meds. I thought, what’s going on here? First I meet a man who’s paranoid, and now this guy. Help!

‘After I returned to Amsterdam, I thought we’d probably never see each other again, but I was wrong.

We kept in contact through Skype. He told me he missed me and asked if he could stay with me when he visited the city.

‘When we met up again, I told him that I was HIV positive. He didn’t flinch, but just asked me why I was telling him now. “You didn’t need to tell me,” he said. There was so much that I wanted to explain to him, so I wrote it all down in a letter, also explaining how Swiss research has shown that taking HIV medication can prevent transmission of the virus.

He asked if it would be okay to show the letter to a close friend of his, who was a doctor. I was nervous, but I let him do it. That evening he dropped by to see me. “It’s true,” he said.

“My friend the doctor says you can’t infect me.”’

Impatience ‘After that I had relationships with two other men.

One of them was much

younger than me. When I told him that I had HIV he panicked and ran out the door. A few days later he came back to apologise.

The other guy responded calmly, but he was very sad. He cried and told me he felt very sorry for me.

‘I used to do my best to please men, but now I’m a lot less patient with them. I’ve gone from one extreme to the other.

I wish I could find a happy medium. It’s good to show some understanding to people who don’t know much about HIV. ‘A friend suggested that I might want to change the way I date – that I should get to know someone first and make sure that I trust them before I tell them. And then only have sex with them if they respond well. I took her advice for a while, but it didn’t suit me at all. Now I do it my way: I tell men when I’m ready.

‘That often means telling a guy on a first date.

I haven’t had a bad response yet. To me, it’s all a matter of how you present yourself. If you think of yourself as a victim, you’ll be treated like a victim.

‘Some people complain that having HIV has destroyed their lives. In my case, it gave me a wake-up call and stopped me from being self-destructive.

Without it, I’d probably be dead by now. I know that sounds crazy, but it’s true. I’m grateful that I’ve learned to like myself.

And to respect myself too.’ * The name of the subject of this article has been changed.

Email us at info@hellogorgeous.nl if you would like to share your story with our readers.

column Written by Bertus Tempert Translated by Tom Johnston Illustration by Henri Blommers and Henk Hageman

when he could hardly see anymore, Timo wanted to keep running. We tied a rope around his waist, which I held, and in that way we managed to run a short lap inside Vondelpark.

I’ve been limping for my entire life, so it was literally the lame leading the blind.

Before Timo died, he gave both Nico and me a ring.

Names Effective HIV medications came too late for Timo, Ernst, Jim and Leo. I was a buddy for them from 1987 to 1993. My first client, as we used to call them, was Jim. He came from the American Midwest and was working on a career in classical music and singing.

He went blind and developed dementia. I vividly remember seeing his parents, who had to deal with hearing that their son was both homosexual and dying, all at once.

My next client was Leo, a flamboyant hairdresser who came from a big family in Brabant. Leo was the outsider in his family, where ‘decency and respectability’ were the most important virtues.

I often still see his name on quilts at official events.

The third man I was paired up with was Timo, another hairdresser, but also a talented rock’n’roll dancer.

He was a real fighter – athletic and energetic – in spite of how ill he had become. He loved going in drag, and he was the only person who ever managed to get me to go out on the town dressed as a woman.

Timo went out that night looking like the Dutch chanteuse Liesbeth List, while my co-buddy Nico looked like Grace Jones.

I’m embarrassed to say I just ended up looking like Lucy Ewing from the TV series Dallas.

Like Jim, Timo also went blind. In an attempt to slow down the cytomegalovirus to some extent, his eye doctor, Odette Visser, injected a medication directly into Timo’s eyes. I sat beside him when she did that, and he squeezed my hand. Even

My last client was Ernst, a quiet and rather dejected Jewish man. He would watch TV the whole day, usually with the curtains closed. Once a week I kept him company for a couple of hours. Sometimes, when I was leaving, he would say ‘I’m glad you were here’ – practically the only words he spoke the whole afternoon. When I was with Ernst I learned how to wait calmly and to be quiet. He died on a warm summer day, emaciated and completely exhausted. His mother and an aunt were there, holding his hands. Each one wore a short-sleeved blouse revealing a number on her arm: a souvenir from a concentration camp.

I wore Timo’s ring for years but lost it in 2002 – the year I found out that I was HIV positive. I became extremely ill at one point, but thanks to the medication I got over that completely. I was lucky; Jim, Leo, Timo and Ernst were not. I will continue to mention their names, so that we won’t forget where we’ve come from. hello gorgeous 29

GORGEOUS CREATURES Written by Leo Schenk Translated by Allen Gibson Photography by Henri Blommers

People and their pets are inseparable.

We may give them food, water, shelter and affection, but they give us so much more.

Unconditional love, for one thing.

Friendship and loyalty too, and a listening ear, without asking any difficult questions.

They can give us an excuse to get out of the house, or a reason to stay in.

Sometimes our pets bring us into contact with other people, even when we don’t really feel up to it.

It’s a relationship based on giving and receiving love.

Presenting ...

30 hello gorgeous

Owner: Dirk-Leen Menken (aged 45) from Noordwijk Pets: Labradors Noa (aged 10) and her daughter Marron (aged 5) ‘My dogs bring structure to my life. They depend on me, so I need to get out of bed early and be home on time for them – I can’t just slip into the pub after work. It’s so relaxing to walk along the beach while the dogs bound along beside me. And as someone living with HIV, relaxation is very important to me.’

hello gorgeous 31

GORGEOUS CREATURES Owner: Guido Zonneveld (aged 41) from Amsterdam Pet: Poezz the cat (aged 18) ‘I think that I’ve developed such a close bond with Poezz because it’s so easy for me to project love, anger and all kinds of other human emotions onto him.

A few months ago Poezz was diagnosed with a heart problem and he’s not going to be with me for much longer. That sad news made me realise how important this little creature has become to me. He’s my own living, breathing cuddly toy. Of course there are times when I’m furious at him too – like when I step barefoot in a puddle of cat sick, for example.’

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Owner: Anna (aged 38) from Amsterdam Pet: Ziggy the Belgian Shepherd (aged 2) ‘Ziggy’s name means “victor and protector”.

He’s a trained guard dog and extremely vigilant.

He keeps a close watch over me, but that doesn’t stop us having fun. We have a great life together.’ hello gorgeous 33

GORGEOUS CREATURES

Owner: Caroline Yskes (aged 44) from Zaandam Pet: Spikey the pug (aged 7) ‘In 2003 I was hit by a car while cycling and spent three weeks in a coma.

When I came round I was devastated: first HIV, now this. The first thing I did was get a dog, Jackey, who gave me the strength to be with people again. He died several years ago. Then I moved to Zaandam and treated myself to another dog, as a way of reaffirming my pride in who I am and what I’ve achieved.

My new dog, Spikey, gives me unconditional love.

We’re very close indeed.’

34 hello gorgeous

Owner: Sander Salsburg (aged 40) from Amsterdam Pet: Pluum the cat (aged 7) ‘The name Pluum comes from plumeau, which means “feather duster” – and that’s exactly what Pluum’s tail looks like when it stands on end.

Pluum is a Maine Coon, the most popular family of cats. I’m fond of him because he’s so cuddly and gives me so much love.

He’s really just a 10-kilo bundle of affection. And he’s not fussy either – he’ll cuddle up to anyone.’

hello gorgeous 35

Bedtime Stories Interview by Leo Schenk Translated by Allen Gibson Illustrations by Henk Hageman

Markus* (aged 44) and Bram* (aged 35) have been married for six years.

In the course of their relationship Markus became infected with HIV. After a period in which they barely had sex with each other, the couple were able to find a way to rebuild their sex life.

Sex is the Bram ‘Markus used to come and drink coffee at the café where I worked.

I always found him very charming, but I never spoke to him. It was only when the cleaner at the café hooked up with him that I realised I’d have to be quick if I wanted to make a move.’

36 hello gorgeous

Markus ‘I didn’t notice anything at first. Later on we met at a party, and I ended up going home with you.’

Bram ‘The first time we had sex, it was great. The second time was good too, but after that it changed.

I know that I can get a

spice of life hello gorgeous 37

BEDTIME STORIES little awkward when I fall for someone. I’d just been through a rough patch and I was having trouble sleeping. You taught me to sleep again. To us, sleeping is even more important and more intimate than all the other things we share. In ten years, I’ve never slept in the same bed as anyone else. And almost nobody else has ever slept in ours. As sleepers, we’re strictly monogamous. Our relationship may not be monogamous, but we very rarely bring our casual sex partners home.’

‘As sleepers, we’re strictly monogamous.’

Markus ‘For the first three months of our relationship we were monogamous. Then there was a period when things cooled a little and we both had sex with other people.’

Bram ‘You said: “If you want this to continue, there’s something you should know: I’m not monogamous. So if that’s what you’re looking for, we’d better end it here.”’

Markus ‘During my first relationship I realised it was important to me to have sex with other men too. Maybe it’s because I was a late starter.’

Bram ‘I was fine with that. The relationship I had before Markus was 38 hello gorgeous

monogamous. I was very young and believed that monogamy was the only option, although I did actually enjoy having sex with different partners.’

Deathly pale Markus ‘Sex plays an important part in keeping me healthy. It keeps me feeling young, both mentally and physically.

For me, sex is the spice of life. We stopped using condoms very quickly.

I’ve always felt the need to fuck without condoms.

It’s just something that’s important to me, something very deep-rooted within me. We agreed that we would practise safe sex with other partners, and I really did try to stick to that, but one time it went horribly wrong.’

Bram ‘That night you woke me up when you got home. You weren’t at all sure about what had happened and you were worried that something had gone wrong.

I said: “Don’t worry, it’ll be alright”. Six months later, the test came back positive. I remember that day very clearly. We were sitting drinking coffee and the phone rang. You picked it up and I saw your face turn deathly pale. We had to go to the clinic right away and I had to get tested. My test was negative. Before it happened, I had thought about how I would feel if you hadn’t stuck to our agreement. I always thought that I’d be furious and feel betrayed.

But the whole situation was so emotional that there was no time for

anger. I also didn’t really think you’d done anything wrong.’

Markus ‘It was a huge relief to know that he wasn’t positive, because that would have been

‘Sex was off the agenda for us.’

too much for me to deal with at that point. Finding out that I was positive was a painful experience.

I had a clear sense of being on the other side of the line now. My emotions were turned upside down and it took me a while to come to terms with it.’

Bram ‘So for a while, sex was off the agenda for us.’

Markus ‘For the first six months I was very scared of infecting him, so we went back to using condoms.’

Bram ‘I felt that you were too withdrawn.

Our relationship became quieter, quite literally.

Then you became ill and your illness began to play a role of its own in our relationship. You were gravely ill, first at home, then in the hospital. For a long time it wasn’t clear what condition you would be in when this was all over.’

Markus ‘There were definitely moments of pain and misery, but

when I became ill, I found this well of incredible strength and optimism deep inside me. I always had a tendency towards depression, mainly based on worrying about all the things that could go wrong. But when I was in hospital, I knew I had hit rock bottom – and the only way to go from there was up. Since that time, I’ve become a much more cheerful person; I’ve never been depressed again.’

Cheating Bram ‘For two years we didn’t have sex with each other, though I did have sex with other people.

I’ve never felt guilty about that. Then Markus started to perk up and began going to Poz&Proud meetings. He became part of a subculture that seemed to have no place for me. That was tough. I realised that I was jealous about what he shared with those men.

It actually felt like he was cheating on me.’

Markus ‘Then I invited him to come to one of the Poz&Proud get-togethers.

He just needed to see who these people are, I thought.’

Bram ‘I had to become part of what Markus was going through – just for a while, so I could keep up with what was happening to him. Ultimately I came to understand that these men had a reason that brought them together.’

Markus ‘By that time there was lots of information available online about the impact of medication on a person’s viral load.

At that Poz&Proud get-

together, we spoke to a couple, one of whom was positive, the other negative. They told us they didn’t use condoms when they had sex, because the positive partner’s viral load was undetectable.

Bram and I looked at each other and thought: well why the hell are we still using them? That night we had sex and Bram didn’t wear a condom.

The thought crossed my mind: what if it goes wrong? But we decided that if something did go wrong, we were acting on the best knowledge available to us at that time.’

Bram ‘You learn very quickly. I know it sounds a bit strange, but I thought: if this saves our relationship, then what’s the risk?

I don’t want anything to get in the way of our lives together. That means that we need to feel unrestricted when it comes to sex. It’s about loving the person, virus and all.’

‘HIV is no longer an issue when we have sex.’

I’ve become more relaxed about the subject. That’s because I’ve lived with Markus and know that the chance of being infected by someone who is being treated is very small. Our way won’t work for everyone, but it works for us. I’m now even part of a gay cohort study at the GGD, where I get tested four times a year.’

Markus ‘People need to make their own assessment of the risks. One important thing to take into account is that you need to feel comfortable with the life you choose. HIV is no longer an issue when we have sex. If Bram were ever to test positive, then we’d know what we were dealing with. Obviously it would be a traumatic experience, and not at all something you should underestimate. But we now know so much about living with the virus that we’d be able to deal with it.’

Bram ‘Back when you were the first person in my life to test positive, things were very different.

But now lots of our friends are positive. It’s an everyday thing now, and it’s become part of our lives.’ * The names of the subjects of this interview have been changed.

Markus ‘My viral load is undetectable and I take my medication as prescribed.

Every three months I get tested for STIs and if I test positive for anything I let my sexual partners know.’

Bram ‘I’ve never had the same fear that Markus had of becoming HIV positive.

Got something to share?

We are looking for people who are willing to tell us about the dilemmas they face in their sex lives. What kind of problems have you encountered?

Have you managed to solve them? If so, how?

Email us at info@hellogorgeous.nl if you would like to share your story with our readers.

hello gorgeous 39

Travel Written by Frank van Schie Translated by Tom Johnston Illustrations by Henk Hageman

If you are planning to travel soon, whether it be inside or outside of Europe, you will obviously want to return home in good health. In some countries you could pick up annoying or even potentially dangerous conditions such as diarrhoea, malaria, skin disorders or sexually transmitted infections.

It is also important to realise that the medical services in some countries won’t be as good as they are in the Netherlands.

The wellprepared traveller 40 hello gorgeous

Before you leave on your trip, it’s smart to get some advice from the municipal health centre (GGD). One of the travellers’ health advisors there can give you important tips based on the guidelines of the National Coordination Centre for Travellers’ Health Advice (LCR). There are standard recommendations on things like vaccinations and antimalarial medication for travellers to each country.

Additional recommendations may apply to travellers who have HIV. In giving you customised advice, the travellers’ health advisors will take your specific health condition into account. In certain cases they might consult a doctor as well.

Last minute Don’t wait too long to get advice. That is especially important for people with HIV. You may need to have a series of vaccinations before you leave to protect you against certain diseases.

Some people with a weakened immune system may also need to have an antibody titre test done before they travel to make sure the vaccination has taken effect.

That means starting with the series of vaccinations at least eight weeks before departure. But even if you have booked a last-minute trip, it still makes sense to drop by for advice, to ensure that you are well prepared.

When visiting the GGD for health advice before travelling, you should provide the advisor with details of your clinical record, any recent test results (including your most recent CD4-cell count) and a list of any medication you are taking. Also bring your ‘Yellow Card’ or ‘Carte

Jaune’ (International Certificate of Vaccination) if you have one.

The travellers’ health advice given to people with HIV needs to take into account factors such as: your increased susceptibility to tropical infections and other medical conditions a possible decrease in the effectiveness of vaccinations and, where applicable, contraindications any interactions between your medication and antimalarial pills practical problems, for instance restrictions on admittance to certain countries, the availability of treatment during your trip, health insurance etc.

Get informed Someone with an immune disorder may experience unexpected complications, such as a new infection or a side effect from or interaction with certain medications. As a traveller with HIV, you would be smart to get informed about the medical services in the countries you are planning to visit.

Your chances of being more susceptible to infections and the chances that the vaccinations you receive could be less effective are normally assessed on the basis of your CD4cell count. Certain vaccines are always contraindicated for people who are HIV positive, regardless of their CD4-cell count. This is the case for the BCG vac-

cine (against tuberculosis) and for the yellow-fever vaccine for people who take Maraviroc (Celsentri).

When it comes to deciding whether to give live-virus vaccines – such as those against yellow fever or the mumps-measlesrubella (MMR) group – to people whose CD4-cell count is less than 500/mm3, a person’s chances of experiencing side effects from the vaccine are weighed against those of his or her contracting the disease.

The travellers’ health advisor will discuss with you any vaccinations that could be relevant in connection with your trip.

The doctor at the GGD’s travellers’ health department will be consulted as well to ensure that you are given reliable advice.

If they need to know more about your health, they may also contact your HIV nurse or specialist.

If you are a man who has sex with men, you can be vaccinated against

Malaria If you will be travelling to a country where malaria is present, malaria prophylaxis (to prevent infection with malaria) will be discussed at length during your consultation. Some antimalarial drugs can interact with HIV medication. Besides medication, it’s also important to think about taking along things like antimosquito agents containing DEET, an impregnated mosquito net and clothes that will cover your skin sufficiently.

Good to know HIV and diarrhoea.

Here, the main risk lies in becoming infected with intestinal bacteria via food and water.

If you have a moderate or serious immune disorder, you will be advised to bring antibiotics along with you.

HIV and skin conditions. People with HIV quite often experience skin problems when they travel. Although little is known about this, HIV-positive travellers should be told of the possible risks and any preventive measures they can take. Among other things, it makes sense to limit your exposure to the sun in tropical regions and to apply creams that offer powerful protection against UV radiation as needed.

HIV and worm infections. Avoid contact with soil by not walking barefoot.

HIV and upper respiratory tract infections (other than tuberculosis). If there is a risk that you might have insufficient access to adequate healthcare for three to four weeks, you may be given a prescription for antibiotics to prevent pneumonia.

HIV and tuberculosis (TB). If you will be travelling to a country where TB is present, you will be referred to the GGD’s Tuberculosis Prevention Department for further information.

Hepatitis B at no cost as part of the national Hepatitis B vaccination campaign. Check out www.manofmietje.nl for more information (in Dutch).

Take note Make sure you take enough of your medication with you on your trip, along with a drug passport (which you can get at your pharmacy) and your ‘Yellow Card’ or ‘Carte Jaune’ (International Certificate of Vaccination).

For some drugs, including powerful painkillers, ADHD medication, tranquillisers and medicinal cannabis, you will need to have a signed certificate from your doctor.

Make sure you have travel insurance that will ensure a quick return to the Netherlands if necessary.

Safe travels and have fun!

For more information, check out the following sites: www.lcr.nl (National Coordination Centre for Travellers Health Advice – in Dutch) www.minbuza.nl (Dutch Ministry of Foreign Affairs – mainly in Dutch, with some information in English) www.istm.org (International Society of Travel Medicine – in English) Source: Landelijke protocollen reizigers-advisering (national protocols on travellers’ health advice), February 2013. hello gorgeous 41

Travel Written by Leo Schenk Translated by Tom Johnston Illustrations by Henk Hageman

United States In 2010, the US lifted its entry ban on people with HIV. Prior to your arrival there, you will need to fill out a form that includes a question about any contagious diseases you might have. Since HIV is no longer on the list of contagious diseases, you can simply answer that question with ‘no’.

Medication If you are taking medication for your HIV, make sure you always carry it in your carry-on luggage in its original packaging (including the information leaflet). That also holds for any other medications you might be using in addition to your HIV meds. You can ask your pharmacist for a ‘drug passport’ to take along with you. Make sure you know the names of all your medications in any case.

The world beckons.

But will you be welcome everywhere with your HIV? And what should you do about your pills?

Here are some tips for travellers with HIV.

Longer trips Don’t forget to take extra medication with you whenever you travel. If you will be away for longer than three months, always consult with your doctor and your pharmacy before you leave. You are allowed to take more than a threemonth supply of medication with you, but unfortunately not all pharmacies are willing to make that possible.

Oops!

I’ve run out...

If you should run out of your medication while travelling, don’t assume that you can always get more of it at a foreign pharmacy. You may need to go to a hospital instead.

Moreover, your specific HIV medication probably won’t be available everywhere.

Visa

TRAVELLING WITH HIV

If you need a visa for a country and the application form includes a question about your HIV status, don’t say that you are HIV positive.

It’s a shame that you need to do it this way, but it will save you a lot of trouble.

Customs declaration Your internist or HIV nurse can write a statement for you that says that you need the medication that you have brought with you for your own use. This can be useful if your bags are inspected at the airport.

However, this customs declaration (also known

42 hello gorgeous

Europe

Outside of Europe

There are no restrictions on people with HIV who travel to other countries within the European Union.

People with HIV are either not allowed to visit a number of countries as tourists or may have difficulty gaining admission with their HIV medication. These countries include Equatorial Guinea, Iraq, Papua New Guinea, Qatar, the Solomon Islands, Singapore, Sudan and Yemen. Remarkably, Aruba – part of the Kingdom of the Netherlands – does not allow people with HIV to work or undertake an internship on the island. If you are planning to travel outside the EU, you can check on www.hivtravel.org to see if any entry restrictions are in force.

China China has also lifted its entry restrictions on people with HIV. You will not get a visa if you want to go live there, however. as a medical certificate) is only compulsory if you are carrying hypodermic needles, for example if you have diabetes or Hepatitis C. In that case, mention that you are carrying these items to the security staff before the inspection.

Not required If a customs agent or someone from security asks you during your trip which condition you have, you are under no obligation to mention that you have HIV. Keep it general: ‘I have a chronic illness.’

Source: Plusapotheken.nl, with

welcome some restrictions deportation short stay not allowed exemption permit required

special thanks to Loek Elsenburg.

hello gorgeous 43

44 hello gorgeous

Double Interview Interview by Gerrit Jan Wielinga Translated by Allen Gibson Photography by Henri Blommers

Raoul (aged 35) was diagnosed with HIV in September 1992 and lives with his husband and their two labradors just outside Amsterdam.

veteran vs rookie

Rick (aged 18) shares a home with three other students in Leiden and was diagnosed in November 2012, some 20 years after Raoul. hello gorgeous spoke to the two men to discover the differences and similarities between them.

Two men, two stories Raoul ‘When I turned 15, I got a letter from someone I’d had sex with on holiday, who told me she was HIV positive. I got tested and found out that I was positive too.’

Rick ‘I came out of the closet when I was 12 and I’ve been sexually active since I was 13. At the start, I wasn’t always very careful. I didn’t take risks all the time, but it was another year before hello gorgeous 45

Double Interview

‘My parents thought I’d be dead within ten years.’

Rick

46 hello gorgeous

I started paying more attention to having safe sex. At the age of 14, I started getting tested by my family doctor and from 16 onwards I got tested twice a year at the municipal health centre (GGD). It’s quite ironic that I became positive at a time when I was actually being very careful.’

(HVN), which offered a way to meet people and obtain information. I started working as a volunteer for HVN too, for instance by going out and giving talks at schools. Later I set up Jong Positief, a group for young people with HIV.’ (see text box)

Secrecy Raoul: ‘I wanted to avoid becoming the centre of attention at home and destabilising the whole family, so I didn’t tell my parents and brothers until I was 21. But by that point I had no choice, because I had picked up a retinal infection.’

Rick: ‘I told my parents almost right away. They panicked because they thought I’d be dead within ten years. I provided them with lots of information.

Now it’s only my mother who worries constantly.

My oldest sister had once given a presentation on HIV at school, so I was able to discuss the subject with her calmly and rationally.’

Raoul: ‘Naturally, hearing that you are HIV positive has an emotional impact on you. That’s why it was important for me to learn as much as possible at the beginning. I tested positive in the pre-internet days, when it was much harder to find information than it is now. For example, all I could find at my local library was a highly scientific booklet published by the Dutch research organisation TNO. Luckily, the doctor who treated me for HIV was a great help. I also got lots of support from the Dutch HIV Association

Rick: ‘Before my diagnosis, I already knew a lot about HIV. I had friends who were positive and they provided me with lots of information. But I also found a lot on the internet.

I quickly realised where I could find reliable information. Unfortunately many forums are full of nonsense, but thankfully lots of institutes have made their databases available to the public, so it’s quite easy to read scientific articles about the subject.

The information provided in the gay scene was also of great value. Because I knew so much beforehand it was easier for me to put HIV in context, although the diagnosis itself was still a shock of course.’

Raoul: ‘At the start it was hard for me to keep it a secret from my family, but I didn’t want to upset the atmosphere at home and have everyone worrying about me. After all, I also had two younger brothers. But naturally I talked about it with my friends, and sometimes they told their parents, who then wanted to call my parents.

It was quite a hassle stopping that from happening.

Even now, I think very carefully about whether to tell someone. I weigh it all up in my head: how

would it benefit me and that other person? I know how much it can change a relationship. That was especially true in the days before effective treatment became available.’

Rick: ‘When I’m using dating websites, I’m struck by how casual people are about safe sex. They’re like: sure, let’s do it bareback! I think most people are aware that they are taking a risk, but underestimate how big the risk is. I’m always very open about my HIV. It’s a question of being honest and responsible. I’ve not started taking medication yet and I’d feel terrible if I infected someone. Obviously, there are always people who lose interest when I’m honest about being positive, but I don’t have a problem with that. I know it’s nothing personal.’

Raoul: ‘That sounds familiar to me. Before I met my husband I was always scared that I’d pass the virus on to someone else.

Over the years I’ve become less afraid of that, especially now that there is effective treatment. I believe that if you have sex with another person as equals, you are both equally responsible for doing it safely. Being open about having HIV makes me feel good. But I don’t spend much time worrying about it now, mainly because there’s practically no chance of me infecting someone as long as my viral load is undetectable. I do worry about things like the longer-term effects of treatment, though. It’s extremely difficult to do any reliable research about

Jong Positief A group within HVN, co-founded by Raoul, which organises regular activities for young people with HIV. Dutch website: hivnet.org/jongpositief

hello gorgeous 47

Double Interview that. At the moment, we just don’t know enough to say whether, for example, someone would have had a heart attack or developed a certain form of cancer if they hadn’t had HIV. So having good quality information remains important.’

Finding love Rick: ‘I still don’t have a clear picture of my future.

I’ve got some plans, but nothing concrete. At the moment I’m studying Dutch in Leiden and composition at the Conservatorium van Amsterdam.

What I’d most like to do is go public with my compositions and get people interested in music. By the way [he says with a huge grin], I often associate music with sex: to play the clarinet you need exactly the right lip tension. Although I’m really enjoying the single lifestyle right now, it would be nice to find love at some point, however that might happen.’

Raoul: ‘My view of the future is heavily influenced by the period during which I contracted the virus. Back then it was a death sentence. Since that time, I’ve taken life one day at a time. Having said that, I’m now married, I’m building up a pension and I’ve bought a house with my husband. But other than that, I don’t look too far ahead into the future.

I’ll be happy as long as I enjoy my job [as a policy officer at a small international NGO dealing with drug resistance – ed.].

One other thing that’s important to me is my work as a volunteer for 48 hello gorgeous

Marieke Bevelanderhuis, an organisation which runs a project offering people the chance to talk to someone who has the virus. Many people would like to discuss things with another positive person without having to explain everything first, but don’t know who to turn to. In fact, I have to leave now, because I’ve got an appointment to go and talk to someone there.’

Rick: ‘And I have to go to the Conservatorium van Amsterdam, where I’m volunteering at the Composers’ Festival. Thanks for the coffee!’

Talk to someone with HIV Are you standing at a crossroads in your life?

For example, are you thinking about telling your family that you’re positive or are you about to start taking medication? Contact the organisation Marieke Bevelanderhuis and you can arrange to talk to a volunteer with HIV. To make an appointment call (020) 665 2099.

Website: www.mbhuis.nl.

Die-hards A group within HVN for people who have been living with HIV/Aids for many years. The Diehards are currently looking for new facilitators.

Interested? If so, contact HVN’s ‘Servicepunt’ (service desk): servicepunt@hivnet.org.

‘Being open about having HIV makes me feel good.’

Raoul

hello gorgeous 49

Simple snacks Sigrid Ducardus (aged 48) found out that she was HIV positive in 1990.

Back then, the prospects for people given that diagnosis were very different. But Sigrid doesn’t want to dwell on the past – she’d much rather talk about food instead!

‘I’ve always loved bread the most, but since my diagnosis I’ve started eating more vegetables.’

Sigrid has tried every drug cocktail available. A few years ago her doctors even told her that they’d run out of treatment options for her. But now she’s taking new medication. ‘It always takes some getting used to.

My taste buds need to get used to it too. Peanut butter doesn’t taste like it did before. Neither does coffee.

Sometimes I just don’t know what I like any more.’ As a result, Sigrid’s appetite has suffered, and at times she has to force herself to eat.

‘That’s why I prefer a simple snack to a whole meal.’ Her favourite comfort food is a spinach recipe that she got from a friend. Ideal as a snack, it’s healthy, quick and easy to make, and – most importantly – it’s delicious!

Sitting down to eat ‘The best way to enjoy food is to sit down at the table,’ Sigrid says. During a mindfulness course she learned to pay proper attention to what she was eating. As an exercise, she had to eat a raisin mindfully.

That means asking questions.

What does it look like? Where did it come from? What does it smell like? How does it taste? ‘It makes you more aware of what you’re eating.’

But sometimes Sigrid will eat her dinner on the couch in front of the TV, especially when she’s feeling low on energy. She has to be careful not to tire herself out. For example, if she spends Thursday evening singing with her choir, she will make sure that she keeps Friday free and takes a nap in the afternoon.

50 hello gorgeous

Comfort food Written by Natasja Oehlen Translated by Allen Gibson Photography by Henri Blommers

‘I love strong flavours.’

What to do...

In this issue...

Simple spinach snack (serves one) Sigrid eats this dish often, especially when spinach is in season (‘I mean, you don’t eat strawberries in the winter, do you?’). In this recipe, the spinach is served in vol-auvent puff-pastry shells, but you could also serve it with an omelette, garlic bread or potato croquettes.

Preparation time: 15 minutes – so you can plate this up in no time!

What you’ll need...

• 1 small bag of spinach • olive oil • 1 onion, finely chopped • 2 cloves of garlic, crushed or diced (you can vary this according to taste) • sliced mushrooms (use as many as you want) • a handful of pine nuts • crumbled blue cheese, such as Roquefort (or goat’s cheese if you prefer a milder flavour) • vol-au-vent puff-pastry shells • salt and pepper

Preheat the oven to 200°C. Dry roast the pine nuts in a pan (without any oil) until they are golden brown, then transfer them to a cool dish to prevent them from overcooking, which would spoil their flavour.

Sauté the chopped onion in the olive oil. Once the onion starts to go clear, add the garlic and mushrooms.

Meanwhile, put the vol-auvent puff-pastry shells in the oven to warm them up.

Stir the spinach through the onion, mushroom and garlic mixture over a high heat, but not for too long – the spinach needs to stay nice and crunchy.

Add salt and pepper to taste. Remove the puffpastry shells from the oven and fill them with the spinach mixture. Sprinkle with the roasted pine nuts and some crumbled cheese.

Now simply sit down at the table and enjoy!

Got something to share?

a comfort-food Are you a cookery fanatic wit h h our readers? recipe that you’d like to sha re wit .nl ous Ema il us at info@hellogorge nex t. and who knows – you might be

hello gorgeous 51

Sites & Services

here I am hello gorgeous is produced by people with HIV and others who are directly involved with them. Everyone donates his or her time and talents at no commercial gain.

You can support us by taking out a subscription at: www.hellogorgeous. nl/abonnement. On this Dutch-language site you can also find news and information about a variety of activities for people with HIV. We have a fan page on Facebook which currently has more than 2,100 likes.

Like us and help make our online community strong and visible.

You can also follow us on Twitter: @hellogorgeousnl

for people with hiv The Dutch HIV Association (HVN) promotes the interests of people with HIV in the Netherlands.

At www.hivnet.org you can find current information in Dutch about living with HIV, blogs written by both men and women, and an active forum.

for questions Do you have questions about HIV, are you wondering about activities taking 52 hello gorgeous

place near you or would you like to talk to someone? You can reach the HVN “Servicepunt� by telephone at (020) 689 2577 on Mondays, Tuesdays, Thursdays and Fridays from 2pm to 10pm.

You can also send an email: servicepunt@ hivnet.org.

Have you just found out that you have HIV? Or would you like to tell your family that you have HIV? If you would like to discuss things like these with someone else who also has HIV, you can contact the Marieke Bevelanderhuis by email: mbhuis@hivnet.org or by telephone: (020) 665 2099 every day from 9.30am to 9.30pm. www.mbhuis.nl In Flanders, people with HIV who are looking for help, advice or someone to listen can call Sensoa Positief (078) 151 100 Monday through Thursday from 1pm to 4pm.

for gay men Are you looking for contact with other gay men who have HIV? Poz&Proud, the group within HVN for gay men, organises many activities where poz men can meet each other.

For current information in Dutch about those

activities and more, check out www.pozandproud.nl.

Poz&Proud have a Facebook group with nearly 500 members. They can also be found on Twitter, where they post things in both Dutch and English: @pozandproud.

You can also reach them by email: info@pozandproud.nl

in English Are you interested in reading about international research and finding information about HIV? Have a look at www.aidsmap.com and www.thebody.com.

There are various English-language magazines about living with HIV, including online titles such as www.poz.com, www.hivplusmag.com and www.positivefrontiers.com.

At www.patientslikeme. org, patients can meet each other virtually and share their experiences and knowledge. The site is a gathering place for patients with all kinds of conditions, so for instance if you have HIV, you can make contact with other people with HIV. You can also record information about your health (e.g. CD4-cell count) and compare yours with that of others.

COMICAL JOKE Written by Joke van Soest Photography by Henri Blommers Joke, sweetie, how can that be?

You knew the risks.

How could you be so stupid?

Hi Daisy, darling. It’s me.

I have bad news.

I’ve got HIV.

Jesus Christ, not another sermon.

Yes Daisy!

Just like you I’ve been stuffing myself more than I should have...

Happy now?

But how could you...

You should have... bla bla bla Couldn’t you just...

It seems so...

It’s just that you’ve got diabetes, and I’ve got HIV. So long, Daisy.

Fat cow.

hello gorgeous 53

ADVANCING THERAPEUTICS. IMPROVING LIVES.

THAT’S WHY WE’RE HERE

at Gilead Sciences is aiming at therapeutics against life threatening viral infections such as HIV, Hepatitis B and Hepatitis C. The focus is on the development of therapeutic regimens in a once-daily pill; or in medical terminology: single tablet approaches.

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000/NL/12-03/PM/1040a

Gilead Sciences Netherlands B.V., Strawinskylaan 779, 1077 XX Amsterdam, www.gilead.com

10-12-13 18:29