"Be Grateful You Don't Have a Real Disease"

Abstract

We characterize how people with rare diseases consider their support needs as being met or neglected by different sources. After a 22-week study with 11 participants, we found that people with rare diseases identify strongly with their conditions but demonstrate a range of outlooks on their condition (positive, negative, and accepting). We found that participants think of themselves as being in a separate "Rare World" from the "normal" people in their lives and that relationships with friends and family members are strained. On the other hand, online communities were described as valuable sources of many forms of support, but do not adequately compensate for the lack of tangible support in offline relationships. We propose an approach to facilitating tangible support that leverages existing research on social matching, towards facilitating support among people with different rare diseases to overcome geographic and symptomatic challenges of coordinating support between people with the same rare disease.