How do you talk to people about your HIV diagnosis?
People with HIV often wonder when and how they should talk about their diagnosis, Swedish research shows. They fear that people will pull away if they are open about their disease.
Once, an HIV diagnosis was a near-certain death sentence. But over the years, drugs have radically altered the prognosis for those infected by HIV, turning it into a manageable chronic disease.
But unlike other chronic diseases, such as diabetes, people infected with HIV find themselves wondering how openly they should discuss their illness. Should they tacitly inform people by leaving their pill bottles out where guests can see them? Should they tell the schools that their children attend?
Desireé Ljungcrantz interviewed twelve people with HIV about their everyday lives as part of her doctoral research at Linköping University in Sweden.
The people she spoke with told her that their lives are full of situations where they face the dilemma of whether or not to tell people about their illness.
Ljungcrantz also relied on documentaries and autobiographies as part of her effort to understand how societal norms are forged in the wake of a disease like HIV, which continues to be emotionally and culturally fraught.
Why is it so hard for people with this disease to talk about it? And do people really need to know that an individual has HIV?
Health care workers lack knowledge
“Today, HIV is much less dramatic from a medical standpoint than it was in the 1980s and 90s, but on the social level, the change has not been as great," says Ljungcrantz, according to a press release from the Swedish university.
Johan Hougen from HivNorge, a special interest organization that works on behalf of people with and affected by HIV, shares this perception.
HivNorge gets roughly 1000 enquires a year and has monthly meetings for its members. Hougen’s impression is that people with HIV encounter many people, even in the health care system, who know little about what it means to have the disease.
“Many people have out-dated ideas about HIV and think that it’s just like it was in the 1980s, and that the disease kills you outright. Now it's a disease that can be treated and that people live with. And most people live very well with it,” he says.
Nevertheless, he also thinks that people are gradually becoming better informed. For example, he thinks it is more commonly known that people with HIV do not infect others if they are being correctly treated with antiviral medicines.
“If you are being successfully treated, there is no risk of sexually transmitting the disease," says Hougen.
Successful treatment means that no virus can be detected in your blood.
Shame and despair
A 2008 report from Fafo, an independent research foundation, showed that just half of those who were HIV positive and questioned as part of the study were open with parents and siblings about their illness. Only a third of people with HIV who had children had told them they had the disease.
Ljungcrantz's dissertation also shows that people with HIV are afraid to be rejected or have a bad experience if they say they are HIV positive. And they feel shame.
“But many people who are reluctant to speak up find that the difficulty of doing so is not as great as they thought," says HivNorge’s Hougen.
No single good answer
Hougen says it is common for people with HIV to struggle with questions about when they should or should not be open about their disease.
“This question may come up at the beginning of an emotional or sexual relationship. Many people also wonder whether they should say something at the workplace or at their children’s school. They may also wonder if they should speak up if they are going to have a minor surgical procedure,” he said.
Hougen says that there is no single good answer to these questions, but that it depends on each individual.
Some people may encounter negative reactions where people pull away. But his sense is that reactions can be extremely variable.
“The three most common reactions are rejection, understanding or compassion," he said.
- Desireé Ljungcrantz: Skrubbsår: Berättelser om hur hiv föreställs och erfars i samtida Sverige. (Abrasions: Stories about how HIV is represented and experienced in contemporary Sweden) PhD dissertation, Linköping University, 2017.