• Sweden's news in English
 
The infected years: when HIV came to Sweden

The infected years: when HIV came to Sweden

Published: 04 Dec 2012 15:10 GMT+01:00

“Shit happens,” 39-year-old Joakim Berlin tells The Local.

In the course of a lifetime, that could mean missing the bus, crashing the car, losing a job or even a relationship.

In 1991, at the age of 17, Berlin received a diagnosis that was, at the time, tantamount to a death sentence. Without having committed a crime.

He had HIV.

"The AIDS epidemic was so shocking for Swedish society because we were a fabulous country that fixed everything and could save the world - that was the general opinion about Sweden, in Sweden," he says.

"And then came this disease; this virus that was just killing people."

Over the last two decades, Berlin has had time to reflect, which goes some way into putting that remarkable opening remark into some context.

Yet he vividly recalls certain moments, such as the time the news was delivered.

"The doctor who told me started to cry so I ended up comforting her when I got my diagnosis," he says.

Berlin made an early decision to be open about his status.

"It was about showing people you can get HIV when you are young – that anyone can get it," he explains.

But it had its repercussions.

The head of his college demanded that he study elsewhere and his parents wanted him to keep the news within the close family.

"They were shocked and ashamed that they hadn’t raised me well enough," he adds.

"They didn’t want my cousins or my aunts or my grandmother to know I had HIV. But I did, because I wanted support when I became ill," Berlin recalls.

"I thought I was going to die and that was a fact then - before the medications we have today."

The stigma experienced by Sweden’s gay community when the epidemic peaked in the 1980s has recently been retold to a record television audience.

Swedish author Jonas Gardell’s trilogy Torka aldrig tårar utan handskar ('Never dry tears without gloves') has yet to be published in its entirety. Nevertheless, a TV drama series based on the books aired in October, quickly becoming one of the year's most talked-about television series.

It tells the story of two young lovers who find themselves and each other amid the backdrop of Stockholm’s 1980s gay scene. But the thrill of coming out is as short-lived as new friendships when AIDS arrives in town.

"It really was how it was back then," says Håkan Steenberg, from the Swedish Federation for Lesbian, Gay, Bisexual and Transgender Rights (RFSL), who was openly living as a gay man at that time.

"I wasn’t infected and almost felt ashamed of being healthy or alive. We lost so many of our closest friends, going to many funerals in our twenties – you shouldn’t have to experience that so young."

The story also touched upon families' reluctance to admit the truth and alienating partners from final goodbyes.

"That really happened," Steenberg recalls.

"Many died from 'cancer' and couples could have been living together for five, ten, twenty years, but families wouldn’t allow the partner's name in the obituary."

Berlin says the response from the series is bittersweet.

"People have started talking about HIV again but they don’t want to recognize that we were so horribly treated," he explains.

Advances in medicine mean HIV is no longer a life-threatening disease, yet the scare and shock factor hasn’t gone away.

Living in Gothenburg today, Berlin works with Postiva Gruppen Väst – a support organization for those living with HIV. His role takes him into hospitals to work with staff on their procedures.

Even now in the medical profession, Berlin says misinformation means treatment can be varied.

"Nurses can react badly, leaving the room and never coming back," he says.

"People in Sweden think that they are very liberal and open-minded," adds Berlin.

"But they trust the government to protect us from HIV and it’s not working."

He is referring to Sweden's Communicable Diseases and Prevention Act. First introduced in 1988, it includes a contentious clause that obliges HIV-positive individuals to inform prospective sexual partners that they carry the virus.

"It’s a law that works negatively," argues Steenberg.

"It prevents people from testing because of a false security - you have sex with someone who doesn’t say anything which is fine because they have to inform you by law. It just doesn’t work like that in practice."

Sweden's so-called "msm" group (men who have sex with men) remains at the biggest risk.

"Here, HIV spreading is the same rate as it was in the 1980s," adds Steenberg.

"Even though we know how it’s transmitted, people are taking bigger risks with their sexual behaviour."

According to statistics from the Swedish Institute for Communicable Disease Control (Smittskyddsinstitutet, SMI), more than 10,000 HIV cases have been reported in Sweden since the beginning of the 1980s.

Today, there are around 6,000 people living with HIV in Sweden.

"Prevalence in the msm group is much higher than for heterosexuals but many of them contracted HIV many years ago – when the spread was much bigger," says Dr. Torsten Berglund an epidemiologist at SMI.

“The increasing prevalence in msm is mainly an effect of the new medicines and the fact that you seldom die of HIV nowadays if you are undergoing treatment."

Berglund explains that the number of newly reported HIV cases in Sweden can be attributed more to immigration rather than an endemic spread within the country.

"Most newly reported cases are people arriving here who already are infected with HIV," adds Berglund.

“That is the main reason for the increase in incidence over the last ten years and its hasn’t affected an increasing spread in Sweden."

In 2011, there were 106 reports of new HIV cases in gay men – 60 of whom contracted the virus in Sweden.

In 1991, there were 110 cases reported in the msm group.

"You can say that the level of spread in the msm group at the end of the 1980s is about the same as today," adds Berglund.

"After the initial uncontrolled spread, there was a very steep decrease in the spread among gay men and it went down to quite a low level after the mid 80s where it has much remained."

Still, the msm group remains the most affected group in Sweden and accounts for the majority of those infected within the country.

Berlin is now happily married and has been together with his partner for 18 years.

He works part-time and takes a daily dose of 8-10 tablets, which bring about a number of side effects. At one point he was close to death after a severe bout of pneumonia.

"We are humans and we make mistakes," he says.

"It’s important to have role models in a society and I’m one of them.

"I have been through a lot over the past 21 years but there’s still much to do in Swedish society to be the liberal country we think we are."

Christine Demsteader

Follow The Local on Twitter

Your comments about this article

17:19 December 4, 2012 by G Kin
"People in Sweden think that they are very liberal and open-minded," adds Berlin.

If only a large majority of the Swedish society could come to this realization....
Today's headlines
Armed Forces to speak out on SAS 'near miss'
Sweden's Armed Forces will speak on Thursday. Photo: TT

Armed Forces to speak out on SAS 'near miss'

Sweden's Armed Forces have called a press conference to share their own version of events, after a Russian aircraft is alleged to have flown dangerously close to a plane operated by SAS last week. READ  

Karlskrona child murder
Uncle charged with 8-year-old's death
The Blekinge District Court. Photo: TT

Uncle charged with 8-year-old's death

A man and a woman have been formally charged for fatally beating an 8-year-old girl - a child murder case that has dominated the headlines in Sweden all year. READ  

Sweden and Romania to discuss begging surge
A Roma beggar in Umeå last week. Photo: The Local

Sweden and Romania to discuss begging surge

Romania's Social Affairs and Labour Minister Rovana Plumb has accepted an invitation to Stockholm in January to discuss the rising number of Roma people begging in Sweden's major towns and cities. READ  

The Local List
Eight things to do when it gets dark in Umeå
The sun sets early in Umeå, but luckily there is still plenty to do. Photo: Umeå2014

Eight things to do when it gets dark in Umeå

After a recent trip to the wild north, The Local's Oliver Gee recommends eight things to do in Umeå when the sun isn't shining. Which at this time of the year, is almost all day. READ  

SAS plane 'near miss' fears blamed on weed
Mikhail Vanin, Russia's ambassador in Copenhagen. Photo: TT

SAS plane 'near miss' fears blamed on weed

Russia's ambassador to Denmark has made light of Swedish concerns over a Russian military jet's alleged near-miss with a passenger plane, suggesting Swedish authorities may have smoked too much cannabis. READ  

Video: Swedish sounds
Swedes get their mouths round tongue twisters
Can you get your tongue around these tongue twisters? Photo: Shutterstock.

Swedes get their mouths round tongue twisters

'Tis the season for some silly news stories. The Local took to the streets of Stockholm to see how well people could pronounce some of the nation's top tongue twisters. READ  

Interview
'Swedes should be proud': Melinda Gates
Melinda Gates talks to The Local. Photo: TT

'Swedes should be proud': Melinda Gates

The Local's blogger Natalia Brzezinski talks to American philanthropist Melinda Gates about why Swedes should be proud of their country, this year's Nobel Prizes and the importance of women having a strong voice. READ  

Child grills Swedish PM on daylight savings
Prime Minister Stefan Löfven. Photo: TT

Child grills Swedish PM on daylight savings

Prime Minister Stefan Löfven made headlines on Wednesday after responding to a 7-year-old's letter which queried the need for daylight savings' time in Sweden. READ  

Swedish free schools sent profits to Cyprus
A beach in Cyprus. Photo: TT

Swedish free schools sent profits to Cyprus

Two entrepreneurs behind a major Swedish free school chain avoided paying taxes by moving their profits to Cyprus, it has emerged. READ  

Bird flu suspected in Scandinavian seal deaths
Around 3,000 seals have died off the coast of Denmark and Sweden. Photo: Shutterstock.

Bird flu suspected in Scandinavian seal deaths

An outbreak of bird flu has likely killed about 3,000 seals off the coast of Sweden and Denmark this year, Swedish authorities have announced, raising the alarm a month after Germany. READ  

RECEIVE OUR NEWSLETTER AND ALERTS
Estelle through the years
Gallery
Princess Estelle through the years
Society
Why are there so many 100-year-olds in one Swedish town?
Society
Is it time to better celebrate Sweden's diverse identity?
Gallery
Property of the week: Huddinge
National
Why has The Local got a new logo?
Blog updates

17 December

An Exclusive Interview with Melinda Gates (Stockholm in my American Heart) »

"This week Nobel peace Prize Winner Kailash Satyarthi urged the world to “globalize compassion”, as he..." READ »

 

14 December

A lot to learn (Blogweiser) »

" I went to the new Starbucks at the swanky Stureplan intersection in central Stockholm. They have a lot..." READ »

 
 
 
National
CATCH UP: Russian plane in Baltic near-miss drama
Lifestyle
How my compass drew me to Sweden
National
The man whose memory you need to remember
Gallery
People-watching: December 13th - 14th
Sponsored Article
How to get your own office anywhere in the world
Politics
'Our party will stand alone': Stefan Löfven
Society
The Local chats to Ruben Östlund, director of Golden Globe nominated Force Majeure
Lifestyle
Ten things to know before a Swedish party
Lifestyle
What's On in Sweden: December 12th to 19th
Gallery
IN PICTURES: The 2014 Nobel Banquet
National
The Local's guide to the Nobel Prizes 2014
Education
Introducing... Education in Stockholm
Society
The Swedish Christmas market with a twist
Lifestyle
Why do so many Swedes have tattoos?
Society
Get 20% off Swedish Christmas decorations
National
Dewani family: We only heard half the story
Business & Money
Business in Stockholm: 'efficiency is money'
Gallery
Property of the week: Östermalm
National
Meet the Swedes hosting festive feasts for 'lonely' guests
Gallery
TIMELINE: Swedish honeymoon killing murder trial
Gallery
People-watching: December 7th
Gallery
IN PICTURES: What's it like to fly planes in Sweden?
National
Submarine hunters 'robbed' of reward cash
National
The Local's Countdown to Christmas
National
'Dangerous' USB charger recalled in Sweden
Gallery
IN PICTURES: Sweden's King and Queen wrap up France tour
National
Analysis: Should Snowden get asylum in Sweden?
National
Swedish schoolboy in female saint role row
Gallery
IN PICTURES: Sweden's political crisis unfolds
Gallery
People-watching: December 3rd
National
What happened to Sweden's ice bucket cash?
Lifestyle
Top Swedish songs of the month
National
Why a child footballer has a huge legal bill
Lifestyle
Top ten Swedish Christmas presents
National
What's inside a Swedish hipster winter market?
Gallery
In Pictures: Gävle's Christmas goat is revealed
Lifestyle
Meet the foreign students scrubbing their way to success
Sponsored Article
SIS: the thinking behind globalised learning
National
Who's playing at Sweden's biggest music festival?
National
How Swedish navy lovers got exposed by Russians
Sponsored Article
Introducing... Family life in Stockholm
Sponsored Article
The best options for oversea transfers
Latest news from The Local in Austria

More news from Austria at thelocal.at

Latest news from The Local in Switzerland

More news from Switzerland at thelocal.ch

Latest news from The Local in Germany

More news from Germany at thelocal.de

Latest news from The Local in Denmark

More news from Denmark at thelocal.dk

Latest news from The Local in Spain

More news from Spain at thelocal.es

Latest news from The Local in France

More news from France at thelocal.fr

Latest news from The Local in Italy

More news from Italy at thelocal.it

Latest news from The Local in Norway

More news from Norway at thelocal.no

785
jobs available
PSD Media
PSD Media is marketing company that offers innovative solutions for online retailers. We provide modern solutions that help increase traffic and raise conversion. Visit our site at:
psdmedia.se
The Local Spain is hiring!
The Local is seeking a new editor for our site in Spain to join our growing team of internationally-minded, driven, ambitious and clued-up journalists.
Details and how to apply
Counselling and Psychotherapy in English
Sometimes living in another culture can cause stress, confusion and feelings of sadness and loneliness. Talking to a professional psychotherapist/counsellor might help you. I am a UKCP Reg. psychotherapist. My practice is in Södermalm, Stockholm.
Contact me to discuss your options