Spreading the stigma about infections

MEDICAL MATTERS:Are we triggering a blame culture around swine flu, serving as a short cut to stigma?

THE MEETING of the multidisciplinary team was drawing to a close; discussion moved slowly from specifics to generalities as the participants began to disengage.

“Do you know anyone who has actually had swine flu?” someone asked. Most people did, and we listened to various descriptions of what it was like to be struck down by the novel virus.

One colleague then said: “I have noticed that quite a few people don’t want to admit to having swine flu.”

A chorus of “whys” produced no obvious response other than surprise that victims would feel stigma about infectious illness in the 21st century.

On the way home, and in the interests of journalistic research, I called into the local shop.

I asked the owner and several neighbours if they would have any hesitation in being open about having swine flu. Their response was interesting: while no one would object if it became common knowledge, neither would anyone especially want to say they had been struck down by swine flu. One person said they would not want the diagnosis spelt out on a sick cert.

Does this mean that swine flu carries a certain stigma? And, if so, what aspects of the viral infection make people fear stigmatisation?

Perhaps there are clues from history. Dr TM Healy's book on Peamount hospital, From Sanatorium to Hospital, looks at the social and medical impact of TB in Ireland. He explains how a mistaken belief in a hereditary cause of the bacterial infection led to stigma.

“The diagnosis ‘tuberculosis’ meant mental turmoil for patients and their relatives. Indeed, because of the social stigma associated with the disease, flat denial of the diagnosis was quite common.

“The belief that tuberculosis was hereditary died hard – as late as the 1940s some Dublin consultants thought it necessary to tell their medical students that people were not born with the disease . . . Because of the tendency to denial [not unknown in cancer today], typically patients came to Peamount only when their disease was well advanced – when, in fact, they had been spreading infection among their immediate family and workmates for years.”

Surely we have moved forward educationally and socially since then?

But again Healy may offer us a clue when he writes, “Tuberculosis is spread by droplet infection: the bacteria are small enough to be carried on invisible droplets that float in the air, like the droplets that make up an ordinary cloud.

“A sneeze by an infected person ejects thousands of the bacteria into the nearby air, to be readily inhaled by family, friends and anyone close by.

“It did not help doctors’ attempts to cure their patients that for thousands of years, during which tuberculosis was regarded as hereditary, this description would have been regarded as nonsense.”

Our advice to the public since the flu pandemic was declared in May has been to avoid transmission by adopting rigorous hygiene. And the HSE TV ad campaign, with its highly graphic image of a droplet spread following a victim’s sneeze in a lift, leaves the viewer in no doubt as to the infectious nature of the influenza virus.

Are we triggering a blame culture around swine flu, a sort of “us and them” that serves as a short cut to stigma?

Reports from the US indicate Hispanic schoolchildren – on the back of the swine flu’s Mexican origins – have already felt the lash of stigmatisation.

A psychologist believes the stigma attached to swine flu is an invisible wound. “It’s going to be very easy to detect who has a sniffle or cough or fever. It’s going to be harder for adults to detect what children may be on the receiving end of bullying,” he says.

There is a tradition of blaming outsiders for the spread of infection: during the Sars crisis in 2003, business in Chinatowns in New York and Toronto fell back, apparently on the basis of the disease’s far eastern origins.

And Typhoid Mary was vilified, not just for infecting people through her cooking but also for being a working class Irish immigrant in the US.

We must try to avoid swine flu stigma, and not just for altruistic reasons. It’s in everyone’s self-interest to do so. People who are scapegoated go “underground”.

They delay seeking medical care, just as TB sufferers did in the last century. Not alone does the person damage his or her health, but the rest of us are exposed to a greater risk from a treatable illness.