• Sweden's news in English

The infected years: when HIV came to Sweden

4 Dec 2012, 15:10

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.

Story continues below…

"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
Refugee crisis
Sweden split over move to tighten asylum rules
Refugees arriving in Malmö earlier in November. Photo: Drago Prvulovic/TT

Sweden split over move to tighten asylum rules

1 hour ago

UPDATED: Public opinion was divided in Sweden after the government announced a shock tightening of asylum rules in a bid to stem the influx of refugees, which could see people turned away at the border.

Champions League
Zlatan eyes hero's welcome to Malmö
Zlatan Ibrahimovic at a press conference ahead of the match. Photo: Björn Lindgren/TT

Zlatan eyes hero's welcome to Malmö

2 hours ago

Sweden's star striker Zlatan Ibrahimovic is planning a glorious night when he returns to his native city to tackle his first club Malmö FF in the Champions League on Wednesday.

The Local List
Seven seriously silly Swedish sayings
What do a cow, beards and a dog have in common? Photo: Fredrik Sandberg/Leif R Jansson/TT

Seven seriously silly Swedish sayings

2 hours ago

Swedish is a tough language to learn, and strange proverbs about cows, dead dogs, and suspicious owls don't help. The Local has listed some of the seven silliest sayings to help you on the way.

Winter in Sweden presented by Visit Linköping
The Swedish Christmas market with a twist
The Gamla Linköping Christmas market. Photo: The Local

The Swedish Christmas market with a twist

3 hours ago

Each year when Christmas comes to town, shoppers fill the streets as markets pop up throughout Sweden. The Local heads to Linköping to get a taste of what makes its annual Christmas market unique.

Refugee crisis
Refugee teen: 'I saw fire and ran outside'
A fire in Onsala in October. Photo: Björn Larsson Rosvall/TT

Refugee teen: 'I saw fire and ran outside'

3 hours ago

Refugees in Sweden describe how they are living in fear following a string of arson attacks on asylum accommodation as the far-right movement appears to grow.

Bacon back in Swedish hotels after huge uproar
Bacon is back on the menu of Comfort hotels in Sweden. Photo: Jonathan Hayward/AP/TT

Bacon back in Swedish hotels after huge uproar

15 hours ago

Petter Stordalen, the owner of the Nordic Choice Hotel Group, has performed a swift U-turn by re-introducing bacon at the chain's Swedish hotels, just a week after banning processed meat.

Presented by Stockholm Business Region
How Stockholm solved a startup’s housing crisis
Photo: Tuukka Ervasti/imagebank.sweden.se

How Stockholm solved a startup’s housing crisis

19 hours ago

The Stockholm startup scene has become more international than ever, recruiting the best of global talent to join the city's booming tech cluster. But if foreigners can't find housing, startups worry, it's all for naught. Now the City of Stockholm has stepped in.

Eurovision 2016
How to get tickets for Eurovision in Stockholm
Sweden's Eurovision 2015 star Måns Zelmerlöw. Photo: Jessica Gow/TT

How to get tickets for Eurovision in Stockholm

20 hours ago

Tickets for the hyped Eurovision Song Contest, to be held in Stockholm in May next year, are set to go on sale on Thursday. Find out how to grab a spot at the world's biggest music festival.

Refugee crisis
Bid to house refugees on Swedish cruise ships
Refugees could soon be accommodated on cruise ships like the one above. Photo: AP/TT

Bid to house refugees on Swedish cruise ships

21 hours ago

Refugees could be housed on Swedish cruise ships in a bid to ease the urgent asylum accommodation shortage as winter sets in, migration authorities have said.

Winter in Sweden presented by Kungsberget
Stockholm's secret ski resort: Kungsberget
Catch air at the Kungsberget snowpark. File photo: Kungsberget

Stockholm's secret ski resort: Kungsberget

1 day ago

Not everyone enjoys 8-hour car trips or expensive train tickets just to hit the slopes. That's why so many Stockholmers opt for Kungsberget – the majestic mountain just two hours away. The Local finds out more.

GUIDE: How to help refugees if you live in Sweden
IN PICTURES: New royal winter snaps of Sweden's Princess Estelle
Sponsored Article
Top five UK weekend getaways from Sweden
Mystery ice circle in Swedish river
Sponsored Article
Beaches, bikes, and buds: studying in Malmö
Blog updates

20 November

Editor’s blog, November 20th (The Local Sweden) »

"Hi readers, It has been a long and busy week for The Local as we reported on..." READ »


21 November

 (Joel Sherwood) »

"Sweden on high alert over threat of Republican candidates. The country raised its terror level to ‘high’..." READ »

Sponsored Article
Sweden must combat extremist 'mirage'
Property of the week: Kungsholmen, Stockholm
Stockholm film festival's top movies
Sponsored Article
How to figure out healthcare abroad
People-watching: November 20th-22nd
Ola Ericson/imagebank.sweden.se
Sponsored Article
Stockholm: the new epicentre of global leadership
Swedish King calls for bathtub ban
Susanne Walström/imagebank.sweden.se
Sponsored Article
‘Food choices in Sweden destroy forests in Asia’
Analysis & Opinion
Why you should care about Sweden raising its terror threat level
Sponsored Article
The cheapest and fastest way to transfer money
Stockholm's best international bars
Is this the best warning sign ever?
Why are more Swedes getting fat?
Sweden's tribute to Paris victims
What is Sweden's sexiest name?
VIDEO: Madonna's emotional tribute to Paris victims at Stockholm gig
Nine of the merriest Swedish Christmas fairs
Sweden cashes in on new kronor banknotes
How lonely are you in Sweden?
Roaming bear shot dead in Swedish village in Uppsala county
Seven tips for scoring firm friendships in Sweden
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: