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
- 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
Pain management in FSHD
The science and psychology of managing chronic pain Chronic pain is one of the more difficult aspects of living with FSHD, and also one of the most challenging to… Read More »
Everyday Mindfulness
At our December 13 Wellness Hour, Jennifer Egert led a short session on mindfulness in which she asked people to focus their awareness on their body sitting. Afterward, there was… Read More »
Talking to my 16-year-old self
by Haviva Ner-David The last line of my author bio reads: “Rabbi Haviva Ner-David lives with a degenerative genetic form of muscular dystrophy called FSHD, which has been one of… Read More »
Women on Wellness – Clothing Hacks and more
The “Women on Wellness” Zoom group is for women with FSHD to discuss female-focused health and other topics. These notes are from the November 3, 2021, meeting, which began with… Read More »