Study shows social support can help 

Originally published on the Psychology Today website, written by Brooke Bryson, M.S. and Kathleen Bogart, PhD. Edited for brevity. 

Two thirds of people with rare disorders feel they don't get sufficient support through the healthcare system. Lack of support and other challenges may explain why adults with rare disorders report greater anxiety and depression, and poorer quality of life, than the general public and people with common disorders (Bogart & Irvin, 2017).

Psychologists distinguish between four types of social support which may be important. Emotional support includes feeling understood and validated by others. Informational support is advice from others. Tangible support is practical help with tasks of daily living. Companionship support, which has received less attention than other types of support, includes engaging in leisure activities with people and generates a sense of belonging.

Our study found companionship support and emotional support best predicted life satisfaction, and companionship support was the strongest predictor, regardless of how much stress one is experiencing, suggesting this type of support deserves more attention. 

Support Conferences and Mentoring

People with rare disorders and their families want to meet others with their condition (Huyard, 2009), but most have never done so. Many rare disease organizations hold support groups or conferences for people with rare disorders to connect with others like them and learn from experts in the field. Companionship and emotional support are some of the main benefits of attending, with one participant noting a conference is the “rare place I feel normal” (Bogart et al., 2017). Being surrounded by others who share one’s condition offers a unique opportunity for destigmatizing companionship and emotional support, which normalizes, reduces isolation, and promotes solidarity.

Giving social support can be more powerful than receiving it. People connected to the rare disease community for a long time find meaning in volunteering, advocating, and mentoring others newer to the disorder.

Making Social Support Accessible 

There are many accessibility challenges to support, such as distance, cost, and a lack of accommodations for the varied symptoms of rare disorders. Some organizations are taking steps to address some of these issues by providing more regional options, resting rooms, and using video conferencing. The COVID-19 pandemic has moved most conferences and support groups online, meaning people with rare disorders from all over the world can connect without travel. Face-to-face time with others is one of the most impactful aspects of groups & conferences. Although promising, it remains to be seen whether videoconferencing can replicate these benefits.

Support Beyond the Diagnosis

A lack of social support is felt across all disorders, and cross-disorder solidarity can help. The National Organizations for Rare Disorders and Global Genes host conferences where people with any rare disorder can come together, support each other, and learn how to advocate for policies supporting their quality of life. Together, people with rare disorders can advocate for resources and funding for psychosocial research and support.

People with rare disorders are frequently misunderstood or disbelieved by others. Greater public awareness of rare diseases could lead to more people having a better understanding of these diverse conditions, thus increasing the availability of emotional support and reducing stigma.

At the time of publication, Brooke Bryson, M.S. was a psychology Ph.D. candidate at Oregon State University. Kathleen Bogart, PhD is an associate professor of psychology at Oregon State University.