• Sweden edition
 
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
Updated: 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
National
King Carl XVI Gustaf opens parliament
King Carl XVI Gustaf arriving on Tuesday afternoon. Photo: TT

King Carl XVI Gustaf opens parliament

BREAKING: Sweden's post-election parliament is meeting for the first time following a fanfare opening from King Carl XVI Gustaf. READ  

Opinion
Should Sweden's school age be raised?
A high school in Stockholm. Photo: TT

Should Sweden's school age be raised?

After the new coalition announced plans to extend Sweden's compulsory schooling until the age of 18, The Local asked two Swedes at high school if they agreed with the idea. READ  

International
Sweden slammed for ecological footprint
Sweden should increase its renewable energy according to WWF. Photo:TT

Sweden slammed for ecological footprint

Sweden is among the world's top ten polluters according to one of the largest scientific studies looking at the impact of humans on earth, produced by the WWF. READ  

Society
Swede's necklace found after 52 years in lake
Ing-Marie Olofsson whose necklace was found. Photo: Private

Swede's necklace found after 52 years in lake

A 66-year-old Swedish woman got the surprise of her life when a fisherman returned the necklace she dropped in a lake at the age of 14. READ  

International
Apology for Swedish model's stolen photos
Malin Sahlén during a Top Model shoot. Photo: TV3/Nina Holma

Apology for Swedish model's stolen photos

A British newspaper has apologised after a freelance journalist stole a Sweden's Next Top Model contestant's photo and created a fake Twitter account used to trick a UK minister. READ  

Brand stories
Johanna N: beautiful jewellery with a story

Johanna N: beautiful jewellery with a story

Aged just 27 and already living off of her own designs, some may consider Johanna Nilsson lucky. But she doesn't believe in luck. She's the founder of a jewellery line blending sustainability, subtle style, and Scandinavian simplicity - and it's taking the world by storm. READ  

Sport
Heel injury sidelines Zlatan in Barcelona clash
Photo: AP

Heel injury sidelines Zlatan in Barcelona clash

Paris Saint-Germain star Zlatan Ibrahimovic will miss Tuesday's Champions League clash with Barcelona at the Parc des Princes due to a nagging heel problem, the French club have confirmed. READ  

National
Stockholm patient tests negative after Ebola fears
The Infection Clinic at the Karolinska University Hospital in Huddinge. Photo: TT

Stockholm patient tests negative after Ebola fears

A patient in a Stockholm hospital who was suspected of having contracted the Ebola virus was given the all clear on Tuesday morning. READ  

Elections 2014
New coalition agrees on defence and migration
A Jas Gripen. Photo: TT

New coalition agrees on defence and migration

UPDATED: The Green Party has committed itself to expanding Sweden's defence force, while the Social Democrats have compromised on work permits for migrants. READ  

National
Fresh Ebola case investigated in Sweden
The patient is being treated at the Karolinska University Hospital. Photo: TT

Fresh Ebola case investigated in Sweden

Doctors in Stockholm are checking a patient suspected of having contracted the Ebola virus. READ  

RECEIVE OUR NEWSLETTER AND ALERTS
Fastighetsbyrån
Gallery
Property of the week: Botkyrka
Education
New government to make school compulsory to 18
Politics
Sweden Democrat wins Deputy Speaker spot
National
Swedish scientists sneak Bob Dylan lyrics into articles
Lifestyle
The five best Swedish songs of the month
Blog updates

28 September

Spoiled Doyle (Blogweiser) »

"What you gotta watch out for in Sweden is the good stuff. http://www.youtube.com/watch?v=Re_EzUe6xpI In Sweden, it’s the good things you have to watch out for. Video on @TheLocalSweden http://t.co/rAb8eGFdTD pic.twitter.com/w37YYwMXy1 — Joel Sherwood (@joeldsherwood) September 29, 2014 " READ »

 

26 September

 (The Local Sweden) »

"Hi readers, Autumn swept into Sweden at the start of this week with snow in the north of the country and flooding in the south. As well as a change in the weather, Sweden’s change in political direction became clearer, with Social Democrat leader Stefan Lofven formally announcing his party would work with the Greens as..." READ »

 
 
 
Gallery
People-watching: September 28th
National
When Italian style meets Swedish simplicity
Lifestyle
Review: Sweden's first alcohol-free nightclub
Gallery
In Pictures: The MS Estonia disaster
Lifestyle
Ten things expat women notice in Sweden
Politics
What's next on Sweden's political stage?
Gallery
Sweden's 2014 election: Most memorable moments
Society
What's on in Sweden
Gallery
People-watching: September 24th
Seaman Oliver Gee with his first lobster
Lifestyle
How to catch the first lobster of the year
Gallery
In Pictures: Fredrik Reinfeldt through the years.
Society
Plucked out of Canada for love and guitars
Politics
How Sweden Democrats went mainstream
Politics
Scandinavia and Scotland: closer links?
Sponsored Article
How to start a business in Stockholm
Society
Why is Stockholm's Södermalm so cool?
Politics
Sweden elections: Who's who?
Sponsored Article
Introducing… Insurance in Stockholm
Gallery
Princess Estelle through the years
Business & Money
Five golden rules for the Swedish job hunt
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

878
jobs available
Swedish Down Town Consulting & Productions
Swedish Down Town Consulting & Productions is an innovative business company which provides valuable assistance with the Swedish Authorities, Swedish language practice and general communications. Call 073-100 47 81 or visit:
www.swedishdowntown.com
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:
http://psdmedia.se
If you want to drink, that’s your business.
If you want to stop, we can help.

Learn more about English-language Alcoholics Anonymous in Sweden. No dues. No fees. Confidentiality assured.
AA-EUROPE.ORG/SWEDEN