Author: Farzad Hoque, Class of 2028

Loneliness is something all have experienced, but it is especially present for people living with chronic illnesses. One might think that individuals with rare chronic conditions would feel lonelier than those with more common diseases, but when looked into it, the reality was surprising. 

Dr. Lobel and Dr. Nicoloro-SantaBarbara at Stony Brook University gathered data via an anonymous online survey of 952 participants, split between those with rare and common chronic illnesses. Recruited through relevant health websites, participants completed a 30–60-minute survey measuring perceived stigma, social comparison, social support, healthcare provider support, self-efficacy, and loneliness. Validated scales, including the Three-Item Loneliness Scale, were used to assess loneliness, and scores were compared to population norms. Analysis showed both groups experienced similarly high loneliness levels, significantly above average, indicating loneliness stems more from shared psychosocial factors than the rarity of the illness.

Several factors stood out as influences for this pattern, one being stigma. People with rare diseases in particular were shown to feel stigmatized. This sense of being “different” or misunderstood can make someone feel isolated. Even though people with more common illnesses were shown to face less of this stigma, they still report high levels of loneliness, largely because of something called “illness intrusiveness.” This is when a certain condition disrupts a person’s life—whether it be making it harder to work, engage socially, or do daily activities. The more the illness interferes with one’s routine, the lonelier one will likely feel.

The real key to fighting loneliness, the researchers noted, is social support. Across the board, whether someone had a rare or common illness, those with strong support networks (whether family, friends, or healthcare providers) felt significantly less lonely. Specifically, in the rare chronic illness group, social support had a standardized regression coefficient (β) of -0.371, and in the common chronic illness group, it was -0.32. Both values indicate a strong inverse relationship, showing that as social support increased, loneliness significantly decreased. Having people to talk to and lean on made all the difference. It’s not about the illness itself, but about whether someone has others to help carry the emotional burden.

There needs to be a focus not just on treating the physical aspects of chronic illness, but also on building stronger support systems. Tackling stigma and helping people connect with others can go a long way in reducing the loneliness that so many people with chronic conditions face.

Figure: A physically ill man walking unaccompanied down the street.

Works Cited:

[1] Nicoloro-SantaBarbara, J., & Lobel, M. (2024). Loneliness and its predictors in rare versus common chronic illnesses. International Journal of Behavioral Medicine, 31(3), 422–432. https://doi.org/10.1007/s12529-023-10231-9

[2] Abubakar, M. (2021). Man in white traditional clothes walking with a cane [Photograph]. Pexels. https://www.pexels.com/photo/man-in-white-traditional-clothes-walking-with-a-cane-6547279/