Mental Health Awareness

May is National Mental Health Awareness Month, a time to recognize that well-being includes both physical and emotional health. For individuals living with FSHD, mental health can be an important part of the journey, even if it is not always discussed as openly as physical symptoms. 

In the FSHD Society’s Voice of the Patient Report, many members of the FSHD community shared that the emotional impact of FSHD can be just as challenging as the physical effects. Navigating uncertainty, changes in mobility, pain, fatigue, and shifting roles can take a real toll, making acknowledgment of these challenges an important step toward support and healing. More than 80% of respondents also reported being moderately or severely limited in daily activities, highlighting how loss of function and participation can affect overall wellbeing. In addition, chronic pain and fatigue (both common experiences with FSHD) are known risk factors for depression, anxiety, sleep disruption, and reduced quality of life. 

Connection can make a meaningful difference. Finding space to talk with others who understand similar experiences can reduce isolation and build resilience. Gathering Place groups such as Wellness Hour, Women on Wellness, CarePartner Hour, and Living Spiritually with FSHD offer welcoming opportunities for conversation, encouragement, and shared understanding. For many individuals living with FSHD, peer support and community spaces can play an important role in reducing loneliness and strengthening emotional wellbeing.  

Research across disability and chronic disease populations continues to show that mental health is shaped not only by our experiences, but also by whether we feel valued and able to contribute. Feeling needed and included can have a powerful impact on overall wellbeing. In our FSHD University session, “The Mattering Effect”,  Isaac and Ora Prilleltensky explore this concept and offer advice on living a meaningful life. 

If you or someone you love could use additional support, we encourage you to explore these helpful resources and practical tools: 

• “What to do in a Crisis” blog post  
• “Managing Difficult Emotions with David Younger” FSHD U webinar 
• “We don’t grow in the good times. We grow during challenges” FSHD Straight Talk with Dr. Jennifer Egert 
• “Family Communication with Dr. Jennifer Egert” FSHD U webinar  
• Our Mental Health and Wellbeing YouTube playlist  

Mental health matters every month. Whether through community, education, professional support, or simply reaching out to someone who understands, the FSHD Society is here to support you on your journey.