Nine out of 10 people with diabetes in Japan feel troubled by the disease’s Japanese name, saying it creates a stigma that the condition is filthy or caused only by bad habits, according to a recent survey of over 1,000 people who have the disease.

Diabetes, called tōnyōbyō in Japanese, is written using the kanji characters for sugar (tō), urine (nyō) and disease (byō). But the image that conjures up doesn't reflect the actual condition of the disease — which is characterized by high levels of glucose, a type of sugar, in the blood, not in the urine — according to the Japan Association for Diabetes Education and Care, the group of diabetes patients and medical professionals that conducted the survey.

The survey, conducted online between November 2021 and September 2022, covered 1,087 people with diabetes and found that 27.4% of the respondents feel the disease’s name is “unpleasant,” while 25.1% said the name made them “feel very uncomfortable.” Combined with those who said they “feel uncomfortable” and “a bit troubled,” 90.2% of those surveyed had issues with the name.

Nearly 80% of the respondents also said that they wanted the name changed to accurately reflect the condition. On reasons why they wanted the name change, many respondents said the use of the word “urine” made them feel it’s something filthy and shameful, according to the survey.

In addition, respondents said the name helps propagate a range of negative stereotypes about the condition, such as the disease being caused by laziness or unhealthy lifestyle choices.

Kazuhiro Tsumura, a doctor and the director of the diabetes association, said the survey was part of the group’s efforts to raise people’s awareness of the issue, as well as to reduce the stigma and misinformation surrounding the disease.

“Glucose can be detected in urine in ways that are not so medically important, such as through a condition called renal glycosuria,” Tsumura said. “There are also people with chronic heart failure who take medicine to induce the release of glucose in urine. ... There are many different reasons through which glucose is detected in urine, so diabetes and sugar in urine are not necessarily closely linked to each other.”

Diabetes occurs when the pancreas does not produce enough insulin or when the body cannot effectively use the insulin it produces. Insulin helps blood sugar enter the cells in the body for use as energy. When there is not enough insulin or the body cannot use the insulin well, too much blood sugar stays in the bloodstream, causing serious health problems over the long term, such as heart disease, vision loss and kidney disease.

The survey covered people with Type 1 diabetes as well as those with Type 2 diabetes. When people have Type 1 diabetes, their pancreas cannot make any insulin or makes very little. People with this type of diabetes require insulin injections.

Type 2 diabetes — which makes up over 90% of all diabetes cases in Japan — is linked to hereditary factors and is triggered by overeating or lack of exercise. But it should not be regarded as something entirely caused by bad lifestyle habits, Tsumura said.

“Generally speaking, it is not good for your health to eat too much or not exercise enough,” he said. “But it’s not true that everyone who overeats or doesn’t exercise enough develops diabetes. Despite this, there’s a widespread stereotypical view that all people with diabetes must have had an unhealthy lifestyle or must be obese.”

The debate over changing the Japanese name for diabetes will not be resolved overnight, association officials said, noting that it requires a consensus in academia as well as deliberations by the health ministry. In the case of schizophrenia, which underwent a name change 20 years ago, the process took nine years after the issue was first raised by families of people with schizophrenia.

In 2002, the Japanese Society of Psychiatry and Neurology changed schizophrenia’s Japanese name from seishin bunretsubyō, which means “split-mind disease,” to the current tōgōshicchō-shō, roughly meaning “integration disorder syndrome.”

The name change was requested by a national group of families of people with schizophrenia, who said the stigma associated with the mental illness — such as being likely to commit crimes or having no prospect of recovery — caused discrimination against patients and their families.