• Sweden's news in English
 

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
Sweden to crack down on silly police reports
A police spokesman told The Local they receive many complaints from people who lose their car keys. Photo: Fredrik Sandberg/SCANPIX

Sweden to crack down on silly police reports

The Swedish government announced on Thursday that is is going to launch an investigation into valuable police time being wasted by officers forced to deal with unnecessary reports and complaints. READ  

Booming exports boost for Sweden's economy
The Swedish economy is growing. Photo: Pontus Lundahl/TT

Booming exports boost for Sweden's economy

Figures showing a surprise financial growth spurt in the second quarter of the year have been hailed as proof that Sweden's economy is on the road to recovery. READ  

Swedes' viral plea finds sender of bottle message
A close-up of the letter Herman Andreas Brunbäck Larsen enclosed in the bottle in 2004. Photo: Sara Hoffman

Swedes' viral plea finds sender of bottle message

A Swedish family has told The Local how they tracked down the sender of a mystery message in a bottle when their Facebook appeal went viral – 11 years after the letter was thrown into the sea by a Norwegian boy. READ  

Why buy a house when there's a Swedish island?
The island is situated between Nacka and Lidingö in Stockholm. Photo: Eldh

Why buy a house when there's a Swedish island?

Ever dreamed of owning your very own Swedish island? This gem in the heart of the Stockholm archipelago could be yours. If you have 65 million kronor ($7.5 million) to spare, that is. READ  

Swedish terror suspect released from custody
Lawyer Lars Salkola at Gothenburg District Court on Friday. Photo: Björn Larsson Rosvall/TT

Swedish terror suspect released from custody

UPDATED: A man detained by a Gothenburg court on suspicion of committing murder in Syria has been released from custody pending an ongoing investigation. READ  

Swedish thieves use mobile app to rob man
Swedish app Swish allows users to transfer money in real time using mobile technology. Photo: TT

Swedish thieves use mobile app to rob man

In cashless Sweden even robbers have had to change their methods, with thieves on the island of Gotland resorting to the popular money transfer app Swish to extort money from their victim. READ  

Gothenburg rocked by 'fairly big' earthquake
An earthquake hit the Gothenburg area on Wednesday evening. Photo: Pontus Lundahl/TT

Gothenburg rocked by 'fairly big' earthquake

A rare earthquake shook the Gothenburg area in western Sweden on Wednesday evening. READ  

Child's toy bow and arrow spark police alert
A Stockholm police car. File photo: TT

Child's toy bow and arrow spark police alert

After a summer of violence the southern Swedish town of Malmö is on edge, so much so that a full-scale police operation was launched for what turned out to be a child playing with a toy gun and a bow and arrow. READ  

What's on in Sweden
Five fun festivals to get you partying in Sweden
The Medieval Week on Gotland. Photo: Marie-Anne Björkman/Medeltidsveckan

Five fun festivals to get you partying in Sweden

Sweden is gearing up for a number of great festivals this week. Check out our favourite five picks as well as a handy interactive guide to all of Sweden's best events. READ  

Heavy rail travel delays expected across Sweden
Train delays are expected on Thursday. Photo: Henrik Montgomery/SCANPIX

Heavy rail travel delays expected across Sweden

UPDATED: Commuters or summer tourists experiencing Sweden by rail are set for travel chaos on Thursday as delays are expected in several parts of the Nordic country. READ  

RECEIVE OUR NEWSLETTER AND ALERTS
National
How a century-old Russian sub wreck got Sweden into a frenzy
Gallery
People-watching: July 29th
National
How to become a Swedish woman
National
Free bus cards for refugees in Sweden
Lifestyle
New snaps of Sweden's baby prince
Blog updates

24 July

Editor’s blog, July 24th (The Local Sweden) »

"Dear readers, Our most read story this week was our tongue-in-cheek guide on how to become a..." READ »

 

15 July

Climate Change: A New Risk Assessment (The Diplomatic Dispatch) »

"Climate change is one of the most serious threats facing the world today.   The UK is..." READ »

 
 
 
National
Why are Swedes so scared of Russian submarines?
Gallery
Property of the week: Simrishamn, Skåne
National
Why has Snoop Dogg said he will never return to Sweden?
Sponsored Article
Getting pregnant the Swedish way
Features
Five outrageously harsh tourist comments about Sweden
Sponsored Article
Why is Sweden still working with Russia?
Gallery
People-watching: July 24th-26th
Travel
Seven ways to beat the Swedish rain
National
Should Sweden's alcohol stores be open on weekends?
National
How to become a Swedish man
Gallery
People-watching: July 22nd
Lifestyle
How to never miss your favourite features on The Local
National
Royal husband on 'breadwinner' role
National
Stockholm to ban all cars for one day
Sponsored Article
Outsourcing drives Apreel's Europe growth
Gallery
Property of the week: Sölvesborg, Blekinge
National
Questions over who would replace Swedish PM in a crisis
Gallery
IN PICTURES: July summer snaps
Gallery
People-watching: July 17th-19th
National
Why are Swedish women joining Isis?
Travel
Ten Stockholm streets you just have to walk down
Sponsored Article
'Swedish women must demand their partners use a condom'
Sport
Did UK football parents threaten Swedish kids?
Technology
Stockholm scientists find world's oldest sperm
Gallery
People-watching: July 15th
National
Angry Swede uses bird nest as fake speed camera
National
Meatball row as Ikea changes recipe
National
Sweden's new princess in spotlight
National
Slimy slugs go on sale to raise cash for EU migrants in Sweden
National
Crown Princess Victoria turns 38
Sponsored Article
Harstena: Life in Sweden's secret archipelago
National
Is this the best marriage proposal story in Malmö's history?
Sponsored Article
'Biofuels critical for climate-friendly flights'
Sponsored Article
Gaps don't have to kill your Swedish CV
National
Why summer could be the best time to invest in a Swedish property
Gallery
Property of the week: Bollnäs, Hälsingland
National
Swedish house on sale for one krona
National
Would you give this ugly food a home?
Gallery
People-watching: July 10th-12th
Travel
Foreign hikers in Sweden set to get more help in English
National
Prince Nicolas enjoys first summer
National
Meet the amazing Swedish granny who loves theme parks
National
Stockholm to host Eurovision 2016
Travel
Five quirky summer tours in Sweden
Gallery
People-watching: July 8th
Sponsored Article
'Swedish industry needs US trade deal'
Sponsored Article
Sweden's 'incredible' chance to connect
Sponsored Article
'Today's refugees could be tomorrow's Zlatan'
Sponsored Article
Crans-Montana: International expat hub
Sponsored Article
‘I don’t feel Swedish, I feel international’
Sponsored Article
VIP Mingle at Almedalen's hottest event
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

3,315
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