Bionews survey finds positive and negative emotions coexist in MG

People with myasthenia gravis (MG) often experience mental health struggles, but their lives are also full of gratitude and hope — and these positive and negative emotions don’t cancel each other out, but rather coexist separately.

That’s according to results from a survey conducted by Bionews, the parent company of Myasthenia Gravis News.

Survey findings suggest that loneliness, regret, and uncertainty are the main drivers of mental health distress among people with MG. This highlights the importance of support aimed at fostering connection and acceptance, not just addressing physical health needs.

“People living with MG aren’t simply ‘coping’ or ‘not coping’. They’re holding several truths at once,” Marcella Debidda, PhD, Bionews’ president of patient insights and clinical solutions, said in an interview with Myasthenia Gravis News.

This is “one of my favorite findings, because I believe that emotional coexistence is part of being human: it is something that we all experience to a certain degree, but conceptually, this is not something we might realize,” said Debidda, who has conducted studies across many rare disease communities. “Someone can feel frustrated and still feel grateful.”

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The survey asked more than 300 people in the MG community about their mental health experiences. Nearly all (93%) were themselves living with MG.

Results showed that mental health problems were common, with nearly two-thirds (62%) of respondents citing depression and/or anxiety as an active concern.

Statistical models showed that loneliness was the strongest predictor of mental health problems for people with MG, stronger than age, disease duration, or physical disability. There was also an association between more frequent feelings of loneliness and more depression.

Regret, or looking back at what the disease has taken, and the uncertainty that comes with MG were also shown to be major drivers of mental health distress.

“The uncertainty day to day completely changes your life,” a survey respondent said. “It can even change hour by hour. You can have a great morning and by the evening be bedridden again.”

In fact, according to Bionews, these three emotions — loneliness, regret, and uncertainty — explained the majority (63%) of variation in mental health distress among MG patients.

“In healthcare, we tend to look at what we can measure with an [international disease classification] code,” which provides information about diagnosis, symptoms, and disease severity, Debidda said.

Such a code “can tell you someone has MG,” but “it can’t tell you they feel lonely, that they’re carrying regret,” or that they live with uncertainty, she added. “And in our data, those emotional factors were the primary drivers of distress.”

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These results underscore the importance of mental healthcare and emotional support as part of MG care, especially in the first year after a person is diagnosed, when mental health distress was found to peak.

“Clinical practice should screen for loneliness, regret, and uncertainty, not rely on physical markers alone,” Debidda said. “Support should be proactive rather than reactive, reaching people before clinical depression develops, especially in the early months after diagnosis, when distress was highest and emotional support needs were greatest.”

Finding humor in tough moments, actively seeking information about MG, and breaking big goals into small steps were the most commonly used coping strategies, each reported by more than 90% of respondents, according to Bionews.

Support should be proactive rather than reactive, reaching people before clinical depression develops, especially in the early months after diagnosis, when distress was highest and emotional support needs were greatest..

Although mental health issues and negative emotions were common among MG patients, positive emotions like hope, gratitude, and determination (the feeling of being in control of one’s own destiny) were also common.

“72% of respondents experienced at least one positive emotion often or always, and 54% experienced at least one negative emotion often or always,” Debidda said. In fact, a sizeable number of patients — 38% — reported high scores related to both positive and negative emotions.

“I take nothing for granted,” one survey respondent said. “Even small things like waking up able to see … breathing all night, eating breakfast under an hour … Nothing is too small to be grateful for.”

‘Feeling frustrated doesn’t mean someone has lost hope’

Notably, associations between the severity of positive and negative emotions were weak, indicating that “feeling frustrated doesn’t mean someone has lost hope,” Debidda said. “For mental healthcare, that’s a big deal.”

Mental healthcare for people with MG should actively work to foster positive emotions and also manage negative emotions, Debidda noted, rather than assuming that one or the other will accomplish the same goal.

“We can’t assume that reducing distress will automatically build hope, or that someone who sounds grateful is doing fine,” Debidda said. “Reducing distress and supporting positive emotions need to be treated as parallel goals.”

The coexistence of positive and negative emotions was particularly pronounced among participants ages 65 and older, who made up nearly three-quarters of survey respondents. These older respondents frequently reported negative emotions like frustration and depression, but positive feelings like hope and gratitude were even more common.

Notably, older respondents tended to report overall less distress than younger respondents. However, in statistical models, these differences went away once the researchers accounted for loneliness, regret, and uncertainty.

“It’s not about being older. Older adults simply reported less loneliness, regret and uncertainty,” Debidda said. “That likely comes from life experience, adjusted expectations, and fewer career and child-rearing pressures.”

In contrast, younger adults with MG are often dealing with the disease manifesting “in the middle of building a career and raising a family,” she said. “Younger patients carry a heavier emotional load, and they’re a group that needs targeted attention.”