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Many people living with type 1 diabetes (T1D) feel isolated by their condition at least some of the time. This type of isolation can pose a serious threat to both mental and physical health. Research indicates that along with loneliness, isolation is linked to poorer health outcomes for people with T1D, and studies suggest there is also a connection between loneliness and treatment compliance—a finding further supported by research examining the positive effects of peer support groups.
Of course, social isolation and loneliness are not unique to T1D. Instead, they are common feelings for anyone living with a chronic illness. There may even be a positive correlation between chronic illness and isolation, with some research indicating that both increase the risk of the other.
As psychotherapist Katie Willard Virant writes in this article for Psychology Today, chronic illness often removes opportunities for interaction and disrupts social connection. In addition to navigating practical matters like mobility and pain management, people with chronic illnesses must also contend with fear, embarrassment, and other social challenges. When completing psychometric assessments, people with chronic illnesses may be more likely to score higher than people without chronic illnesses. For example, when answering questions on the UCLA Loneliness Scale, a popular psychometric tool, respondents with chronic illness might be more likely to identify with statements like, “I feel as if nobody really understands me”, or “I feel shut out and excluded by others.”
Pre-Existing Perceptions of Chronic Illness
The idea that chronic illness has an isolating effect is certainly not a new one. However, throughout the COVID-19 pandemic, people living with T1D and other chronic conditions have also encountered a different, more alienating type of social isolation.
Now a ubiquitous term associated with the pandemic, the phrase “pre-existing conditions” is everywhere—from news articles and social media posts to everyday conversation. Millions of people fall under the term’s wide umbrella. According to the United States Department of Health and Human Services, 19–50% of non-elderly Americans have some type of pre-existing health condition, with the numbers significantly higher for those between the ages of 55 and 64.
Like everyone else, these individuals have experienced lockdowns, social distancing, mask mandates, and other pandemic restrictions. But unlike those without pre-existing conditions, they have also had to grapple with new levels of physical, mental, and social vulnerability.
Writer Ed Yong covers this topic in depth in his recent piece for The Atlantic, “The Millions of People Stuck in Pandemic Limbo.” He writes about the experiences of severely immunocompromised people during and especially after lockdowns in the United States. “Over the past year,” he says, “as many Americans reveled in their restored freedoms, many immunocompromised people felt theirs shrinking.”
Yong’s article focuses on severely immunocompromised people, including those on immunosuppressant medications, but his piece is likely to resonate with anyone living with a pre-existing condition—including people with T1D.
According to the CDC, T1D is just one of countless conditions that make a person more vulnerable to the effects of COVID-19. Since 2020, this vulnerability has been relentlessly studied, discussed, and even reported as the true cause of death for many of the pandemic’s victims.
Here are just a few examples: In a 2020 article about the death of a Syracuse man, his mother describes him as “overweight, but otherwise healthy.” A 2021 article reporting the death of a 16-year-old Canadian quotes the children’s hospital where he died: “In general,” they assure the reader, “When people die from COVID-19 at a young age, they have other significant underlying conditions.” In a similar piece about a different teen, health officials say they are “investigating” whether the young victim had any underlying health conditions.
Throughout the pandemic, the media has continued to propagate the idea that all COVID-19 deaths must be linked to pre-existing conditions. And yet, lately, mandates intended to protect the vulnerable have largely been lifted in the United States. As Yong explains in his article, this sends a very clear message: “When a society acts as if the deaths of vulnerable people are unavoidable, and does little to lessen their risks, it is still implicitly assigning lower value to certain lives.”
Moving forward, researchers may need to add a new statement to tools like the UCLA Loneliness Scale: “I feel as if my life is not valued by others,” or perhaps, “I feel expendable.”
Taking Control of the Narrative
The long-term effects of the past two years will be far-reaching and unpredictable. For years to come, the pandemic will impact our economies, work lives, healthcare systems, and individual health—and it will also continue to shape the lives of people with chronic illnesses.
Most of what has happened throughout the pandemic has fallen outside of our individual control. We have all been affected by COVID-19 in some way, whether physically, personally, socially, politically, or financially—and many of us have been left feeling helpless as a result.
But there is something we do still have control over: The way we think about, talk about, and treat others. We can choose to divide ourselves into those who have pre-existing conditions and those who don’t. Or, we can choose to be more mindful of our words and what they really mean. We can focus on returning to “normal.” Or, we can take steps to make that state of “normal” as inclusive as possible.
Unlike an unpredictable mutating virus, these choices are completely within our control.
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Pre-Existing Perceptions: T1D, Isolation, and the Pandemic
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