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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
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Finding Resilience with FSHD, part 1 - CA Chapters Meeting March 2022
All California Chapters Meeting recorded on March 13, 2022. "Finding Resilience with FSHD" with Dr. Kent Drescher.
Find your local chapter here: https://www.fshdsociety.org/connect/local-chapters/ -
Resiliency in Living with FSHD, part 2 - CA Chapters Meeting May 2022
All California Chapters Meeting
Resiliency in Living with FSHD
In part 2 of Resiliency in Living with FSHD, our guest speakers, Dr. Kent Drescher and Dr. Robyn Walser, discuss, role play, and answer questions about Acceptance and Commitment Therapy (ACT) as a practiced technique to handle trauma and PTSD associated with FSHD.
For Part 1 of Resiliency in Living with FSHD: https://youtu.be/yzphBO9Fi7I -
The Mattering Effect: How Feeling Valued and Adding Value Shape our Lives
Presented by Isaac and Ora Prilleltensky. Mattering consists of feeling valued and adding value, to ourselves and others. By feeling valued we mean being appreciated, respected, and recognized. By adding value we mean making a contribution and making a difference in the world. We feel valued by, and add value to, self, relationships, work, and community. Ableism, racism, discrimination, and oppression work against feeling valued and opportunities to add value.
The mattering effect refers to the positive or negative consequences of feeling like we matter or not. Feeling valued is a precondition for personal health and well-being. Adding value, in turn, is a prerequisite for a meaningful life. The negative effects of not mattering, however, can be devastating. Ostracism, exclusion, and rejection are not only painful, but they can also lead to violence and depression. Feeling like we matter is one of the most defining features of humanity. When that feeling is present, we thrive. When that need is thwarted, we develop one of two types of problems: devaluation or overvaluation. We feel either invisible or invincible; ignored or grandiose. The presenters will discuss the implications of mattering for living with a disability.
Isaac Prilleltensky, former Dean of the School of Education and Human Development, holds the Erwin and Barbara Mautner Endowed Chair in Community Well-Being at the University of Miami. Ora Prilleltensky, who has FSHD, is a retired professor from the University of Miami, where she directed a major in Human and Social Development. Their latest book, from which this text is excerpted, is How People Matter: Why it Affects Health, Happiness, Love, Work, and Society (Cambridge University Press, 2021).
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 »