Knowing others who share your diagnosis makes you happier

Findings from major study of long-term disability

We at the FSH Society have long believed that helping individuals and families with FSHD meet one another is one of the most important services that we provide. It’s why we invest energy in our peer support network, local gatherings, social media groups, and the biannual FSHD Connect conference. Now there is scientific evidence to support our hunch. According to a large, 7-year study conducted by the University of Washington, individuals with chronic health conditions are happier when they know friends who share their medical diagnosis.

This intriguing news reached us via our former board member Ann Biggs-Williams, who was a volunteer participant in the Aging and Quality of Life Study. Begun in 2009, it is the largest longitudinal study of individuals living with long-term disability. The study collected 7 years of data from 1,864 participants, including 1,218 who have participated for the entire length of the study. The study was led by Michael P. Jensen, PhD, and his colleagues at the Aging Rehabilitation Research and Training Center at the University of Washington.

According to a letter to its participants reporting the study’s findings:

• Middle-aged individuals reported greater distress than younger and older individuals.
• Individuals who reported finding purpose or meaning in their lives reported less distress.
• Individuals who showed greater resilience reported a higher quality of life and were more satisfied with their ability to participate in social relationships.
• Greater fear of falling correlated with lower rates of physical activity.
• Those who had friends who shared their medical diagnosis reported being happier. Conversely, those who did not list any friends sharing their medical diagnosis reported having more severe physical limitations and lower quality of life.

So, if you have been hesitant to reach out to others in the FSHD community, we say yes, do it, it’s good for you! There are many ways to make connections:

• Attend a get-together near you, or one of our monthly online meetings (see our Event Calendar);
• Join one of our private Facebook communities;
• Come to our next FSHD Connect national meeting;
• Or simply contact the Society, and we can connect you with a peer.

The Aging Rehabilitation and Training Center has developed a series of evidence-based fact sheets for individuals and clinicians. They can be downloaded here.

Image sourced through Creative Commons – Govanhill photoshoot at the Arches, Glasgow: Laughing