Most Prefer to Suffer in Silence : Victims Mum About AIDS, Study Finds

People diagnosed as having AIDS tend to keep the news to themselves, trying to carry on as usual even if it means romantic relationships break up and new ones never form, a French researcher said.

In a study of 103 patients with AIDS and AIDS-related complex, Michael Pollak of the Centre National de la Recherche Scientifique and four colleagues found a majority even avoid professional counseling services, preferring for the most part to suffer in silence.

“Clearly the diagnosis is perceived as a social stigma that can be escaped only through silence,” Pollak said in a presentation recently at the third International Conference on AIDS.

Pollack and collaborators conducted a survey of 103 patients with AIDS or ARC, a group of less severe AIDS-like symptoms that sometimes lead to full-blown acquired immune deficiency syndrome. All were males, and 91% were homosexual or bisexual.

‘Adverse Effects’

“Anticipating adverse effects or even open discrimination in their social and work life, almost all seropositive patients keep silence about their diagnosis,” Pollak’s group reported.

The team found confirmation that “an HIV infection is a testing ground for the strength of social relationships.” HIV is the virus that causes AIDS.

One-third of all couple relationships in the study group, whether homosexual or heterosexual, dissolved after diagnosis, Pollak said. One-third of the patients had no partners after the diagnosis and all gave up high-risk practices. Those that continued having intercourse used condoms.

“In our sample we have encountered no patient having established a stable . . . and confident relationship after being diagnosed,” Pollak said. “The vast majority of patients have to face their situation in solitude.

Stable Relationship

“Among those who have a stable couple relationship, only one out of two has informed his lover or woman, rather preferring separation than an open explanation.”

Patients broke their silence only when symptoms became apparent or when hospitalization was necessary, but even then, they preferred to tell a close friend, brother, sister or mother. They rarely told their fathers, Pollak said. Thirty per cent kept total silence.

Each was introduced to a psychologist and psychiatrist, he said.

“Nevertheless, few patients accept such professional support (6% by a psychologist, 3% by a psychoanalyst and 4% by a psychiatrist). More than 80% explicitly reject such an offer,” Pollak reported.

Although almost 90% knew about support groups, only a third contacted one, and only three maintained contact over longer periods.

‘Precarious Health’

“The fear of establishing friendship on an ‘artificial’ ground (sickness), the fear that contact with other patients reminds one about his own precarious health,” are factors Pollak said.

Also, he said, refusing help and continuing a normal life symbolize hope and reflect the modern belief that sickness and sexuality are private matters. However, Pollak said, this makes it difficult for people close to the patient.

Among the 24 patients who informed their employers of the diagnosis, two were fired; four got negative remarks in return; eight got positive reactions, such as compassion or understanding, and 10 reported neutral reactions.

“HIV patients tend to choose social self-isolation deliberately,” but at the same time, they resent it as something forced on them by society, Pollak said.