The Multilayered Impact of Rare Disease on Relationships

The Multilayered Impact of Rare Disease on Relationships

Life with a rare condition can have a significant impact – and often cause unmendable strain – on close relationships, from family members to friends to romantic partners. For some, they might not be as available to hang out at night as they previously were because they want or need to prioritize their health. Or a longtime partner may be unwilling or unable to handle being with somebody with a complex, potentially unpredictable condition.

Findings from Health Union’s surveys of its rare condition communities show one’s relationships and social life can take significant hits. For example, 54% of Hidradenitis Suppurativa In America 2021 respondents report that the condition impacts their family and social life. And, as one patient leader put it, “I spent many nights upset and angry at how this disease ruined everything in my life, including my relationships.”

These findings, and other data from Health Union’s In America surveys and perspectives from patient leaders engaging with the company’s online health communities, help to illustrate the ways in which life with a rare condition can impact all types of relationships, and how that can ultimately impact overall quality of life. They can also help healthcare companies better understand the role they can play throughout the patient journey, in terms of providing resources and potential solutions.

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