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" will offer webinars, virtual and in-person support groups, 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
Scroll down to view videos and blog posts relating to mental health and well-being.
Mental health and wellness videos
The Mattering Effect: How Feeling Valued and Adding Value Shape our LivesPresented 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).
Managing difficult emotions and experiences, with Dr. David YoungerIn this FSHD University webinar, psychologist David Younger will teach you about one of his favorite mindfulness practices. It will help to demystify the concept of mindfulness so you can put it into action in your daily life in a clear step-by-step process. He will provide a handout and guided practice audio to anyone who is interested.
David Younger, PhD, is a clinical psychologist based in Austin, Texas. He was diagnosed with FSHD at age four, the same time as his mother and grandmother were also found to have the condition. In a compelling blog post, he shared his personal journey of learning to accept his life with FSHD and moving beyond it to finding well-being and becoming a clinical psychologist. Today, “I have a 100% online video-based practice with individuals and couples,” he says. “My two main focuses are relationships and people with chronic health conditions. That said, I also see people dealing with depression, anxiety, stress and life-changes.” Visit Dr. Younger’s website for more information. http://www.dbyounger.com/
For more resources about FSH muscular dystrophy, visit fshsociety.org.
FSHD Radio Show with Sue Drescher, Sharegiver HourBay Area Chapter Director and passionate FSHD community advocate, Sue Drescher, joined Tim on the FSHD Radio show in February 2021 to talk about her efforts to bring the community together and support those who live alongside and love those with FSHD.
Mental health and wellness blog posts
Flamingo Las Vegas, Carson City ballrooom Saturday, June 9, 2018 9:30-11:00 AM PST An experiential workshop for patients, family members, and friends for managing stress, illness, and disability. This is… Read More »
https://www.youtube.com/watch?v=s67L70Acul4 Note: The video will be posted only until May 31, 2018. Download Chris Graham’s Slide Deck. In this talk, focusing mostly on his group’s work in muscle disorders, Chris… Read More »
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 »
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 »
LISTEN LIVE HERE Wednesday, June 28, 2017, 9:00 pm EST / 8:00 pm CST Our guest is Carol S. Birnbaum, MD, a psychiatrist in private practice in Cambridge, Massachusetts. She is a… Read More »
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 »