A conversation by the sea - living with HIV

It was a sunny day in November when I met Grace in Tylösand. She was visiting to participate in an activity for people living with HIV and we took the opportunity to talk over lunch. With a broad smile, she radiates presence as we sit opposite each other at the Hotel Tylösand restaurant overlooking the bay of Laholm. Grace has a background in finance and came to Sweden to further her education in international trade at one of Sweden's most prestigious programs. But when she tested positive for HIV after a 9-month-long care carousel, her life took a new turn. During our meeting, she talks about life with HIV, loneliness, stigma and how she wishes she had found out about her diagnosis earlier.

"I was very, very scared."

At home in Tanzania there is a lot of talk about HIV, in the workplace, on TV and there are several church and other initiatives to raise awareness about HIV. Although Grace was sexually active, the stigma surrounding HIV was too great for her to take the step to learn more. She knew how HIV is transmitted, but did not want her sexual activities to be associated with HIV because of stigma and fear. 

When she arrived in Sweden in June 2022, her goal was to get a master's degree to continue working in finance. But a persistent problem in her lower abdomen led Grace to visit a medical center:

"When I arrived, I had some gynaecological issues, but it wasn't serious and it started already back home. I never saw any doctor, so I guess when I got here my immune system was getting lower and the problem was getting more prominent so I decided to see a doctor at a primary care facility." explains Grace.

The doctor at the health center did not suspect HIV, but referred Grace to a gynecologist at a major university hospital for further investigation. The gynecologist discovered malignant cell changes that a person with a normally functioning immune system would not normally experience. After the examination, the gynecologist suggested that Grace should take an HIV test.

"I freaked out so bad and was against the idea. I did not have any education about it and I was very, very scared." Grace says emphatically, while shaking her head slightly.

The gynecologist explained in detail the importance of getting tested and the risks of not getting tested. Despite her fears, Grace agreed to take an HIV test and was promised that the results would be ready by the beginning of the next week.

"I went home that Friday and I could not sleep for two days, I just read and read"

On Monday, Grace received the news that she had tested positive for HIV, 9 months after initially seeking treatment for pelvic pain. 

"Emotionally I was in a very bad condition and they provided me with a therapist and all kinds of things"

Although Grace was shocked by the news, it was the fear of transmitting HIV to others that weighed most heavily. 

Sweden offers health examinations for asylum seekers and quota refugees, among others, but far from all those who are offered the opportunity undergo the examination. Several regions, including Stockholm, Västra Götaland and Skåne, have had a coverage rate that has long been below 50%, which means that less than half actually complete the health examination (Hälsoundersökningar för asylsökande och nyanlända- vägen fram, SLL, 2017). Students, workers, relatives and other groups migrating to Sweden are often not offered any health examination at all, something that Grace herself requests:

"They should test either at the border or when submitting an application, but this is not to prohibit or hinder, or jeopardize the entry, no, but it is to know. Like if I came here to Sweden and slept with someone, I could have transmitted hiv to someone. But if I would have known my status before coming, that would not have happened."

In the meeting, it is clear that Grace is relieved that she did not transmit HIV to anyone else, but also horrified that the risk was there when she did not know she was carrying HIV herself. The thought that it could have taken longer for her HIV to be detected makes her think. We both take a few bites of lunch and pause the conversation for a moment, then move on to the next part of her story.

The challenge of learning to live with HIV

Grace was quickly put on medication and has quickly learned to understand HIV and how the medication works. Her family has a history of diabetes, and a significant weight gain made Grace wonder if this was a 'back to health' reaction, a term that describes the body's recovery, which is often associated with some weight gain. In Grace's case, the weight gain was close to 20 kilograms, causing her to worry about the risk of developing diabetes. Together with her doctor, they keep track of her treatment and have an action plan to change her medication if necessary, but it is the social aspect that has been most affected by the HIV diagnosis.

"I was a very happy person, networking and meeting new people, but after the diagnosis things changed and I have become sort of a new person. That had a lot of negative impact on my well being, and I have been taken to the emergency psychiatric hospital several times."

She goes on to explain that meeting others has helped a lot, especially talking and socializing with people living with HIV who have a bright outlook on the future. Through a contact at the infection clinic, Grace was introduced to the Positive Group West, meetings that Grace describes as "amazing, with smart and healthy people". The community has changed her perspective on life for the better, and she wishes there had been someone living with HIV in the hospital to connect with when she was diagnosed.

Stigma contributes to silence

"My main concern is it feels lonely, I feel lonely." says Grace when asked about the challenges she feels today and sees ahead. She believes that HIV is not talked about enough in society. Family and friends' views on HIV are still inadequate and the stigma surrounding HIV is perceived as large and sometimes insurmountable. Her own image of HIV from Tanzania is of sick people at the end of their lives, which creates even more stigma and fear around HIV. "Few people who live normal healthy lives are open about their HIV," she continues. As a final message, Grace says that education about HIV and stigma should be high on everyone's agenda. 

"Focal point should be to educate and end the stigma. That should be the focal point. If we get rid of stigma then we can talk more about it."

I thank Grace for sharing her experiences with me. We get up, put on our coats and walk to the parking lot to head home separately.

Emanuel Karlström for HIV-Sweden