For many people living with FSHD, the anxiety and stress of coping with disability, pain, fatigue, and interactions with others can be just as debilitating as the loss of muscle strength and function. People must deal with feelings of grief, anger, frustration, and hopelessness. FSHD takes a toll on mental health, but therapy, coaching, mindfulness, and other techniques can make a difference. Circumstances can't always be changed, but we can transform how we cope with them through knowledge, practice, and a community of support. Our "department of mental health" offers monthly Zoom meetings, webinars, articles, and resources to help you move toward greater well-being and happiness.
Resources to help you find a therapist
- American Counseling Association directory of therapists
- Rareminds for the UK, a mental health service for people with rare diseases
- Mindfulness resources from Jennifer Egert, PhD
- Innopsych - a searchable directory of therapists of color
No one should have to walk the FSHD journey alone and there can be great strength in shared experiences. Come to the Gathering Place - a collection of groups that bring together patients, family members, and friends who are walking similar paths.
Groups gather each month to share experiences, exchange ideas, offer support, and gain insights. Find the group - or groups - that appeal to you and fit where you are in your FSHD journey, then join the group and meet us online each month.
Mental health and wellness videos
Mental health and wellness blog posts
FSH Society Talk Radio Live Support Group!
Join us on March 28th, 9:00 PM EST / 8:00 PM CST for a live, on-air support group session with the regulars at Connecticut Connections, the FSH Society’s member group… Read More »
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… Read More »
FSH Society Talk Radio to interview authors of “I’ll Push You”
Listen live on BlogTalkRadio on Wednesday, January 31, at 9:00 pm EST, or listen and ask questions on the air by calling (949) 270-5953. On our next episode of the FSH… Read More »
FSH Society Talk Radio, On-air Support Group
Join us on Wednesday, December 27, at 9:00 pm EST / 8:00 pm CST for our live radio show. Tune in HERE. On this episode, the featured guest is you, the… Read More »