The stigma of multiple sclerosis can increase patients’ risk of depression, but a socially supportive environment, a sense of belonging and a sense of independence can help ease the problem, a study Penn State University study reports.
Researchers have known for some time that depression is the most common mood disorder in people with MS. They also know that those with the disorder have higher rates of depression than the general population.
About “50 percent of people with MS will have depression during their lifetime, compared to 17 percent of the general public, but the causes of these high rates of depression in MS are not well understood,” Margaret Cadden, a doctoral student in psychology, said in a Penn State news story. She was the first author of the study.
For reasons not yet understood, some MS therapies can drive or worsen patients’ depression.
A study that Cadden led helped identify a social contributor to depression — the stigma of MS.
Stigma is the feeling of being seen as separate from and less than others, due to a personal characteristic or belonging to a certain group.
A previous study found that most people with MS experience some stigma. Penn State researchers found that people with MS who feel a lot of stigma also report more symptoms of depression. In addition, they are likely to be reaching the level of clinical depression — a severe form of mental disability.
The Consortium of Multiple Sclerosis Centers and the National Multiple Sclerosis Society funded the study, which involved findings from a survey of 5,369 MS patients. The North American Research Committee on Multiple Sclerosis conducts the survey twice a year.
Researchers controlled the findings for gender, the extent of impairment caused by MS, whether patients smoked, and their physical activity.
By looking at findings for each participant over time, researchers were able to distinguish cause and effect. They uncovered stigma as a likely cause of depression in people with MS.
“One of the biggest contributions of this research is testing the association between stigma and depression longitudinally [over time],” said Jonathan Cook, an assistant professor of psychology at Penn State who was the study’s senior author.
“Very little research on stigma, in general, and chronic illnesses like MS in particular, has examined the consequences of stigma over time,” he said. “By testing how stigma affects depression longitudinally, we’re better able to separate out cause and effect.”
Several MS symptoms can make patients feel apart and inferior, including movement impairment, speech problems, cognitive difficulties, visual problems, fatigue and pain.
“Research suggests that having a chronic illness can make people feel isolated, separated and judged,” Cadden said. “People living with MS know that they have a disease that’s currently incurable, and that often brings a host of symptoms that may contribute to people becoming stigmatized.”
The team said strong social bonds, making sure that MS patients are connected with family and friends, and a sense of independence can help patients become less vulnerable to stigma.
“We found that people with greater psychosocial reserve — that is, their sense of having a support network and a sense of belonging, and being able to advocate for their needs — were less affected by stigma,” Cook said. “They were less likely to be depressed even if they experienced stigma.”
The study also improved scientists’ dunderstanding of the role that stigma plays in other illnesses.
Some researchers have believed that there’s a stronger sense of stigma among people with chronic illnesses they could feel personal responsibility for — such as HIV or lung cancer.
The Penn State study suggested that stigma may trigger depression in people with conditions that do not stem from a perceived lack of personal responsibility, such as MS.
Researchers presented some of the study’s findings at the Consortium of Multiple Sclerosis Centers Annual Meeting in New Orleans in May 2017. The presentation was titled “The Contribution of Stigma to Depression Symptoms and Depression Status Among Individuals Living with Multiple Sclerosis”.
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