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
How my progressive disease taught me that it’s okay to be human
By Kristin Duquette My body constantly changes and at times, I feel like there’s nothing I can do about it. Every time I lose another piece of mobility, my mind… Read More »
Reflecting on FSHDselfies
By Mia Archuleta, Granbury, Texas I have been thinking about people wondering exactly how the FSHDselfies have brought awareness to FSH dystrophy. Here are just a few examples of my… Read More »
The Truth Hurts, but I Can Bear It
The following essay was written by Zabrisa, a 16 year old with FSHD who lives in Arizona. “Are you strong enough? Are you really sure you can do this, you’re… Read More »
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