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
Scroll down to view videos and blog posts relating to mental health and well-being.
Mental health and wellness videos
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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). -
Managing difficult emotions and experiences, with Dr. David Younger
In 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 Hour
Bay 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
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 »
Women on Wellness (monthly Zoom)
By popular demand, we are launching our Women on Wellness Zoom support group starting on Wednesday, October 6. This meeting will take place on the first Wednesday of each month… Read More »
David Younger on managing difficult emotions
“I no longer live at the mercy of my mind,” says David Younger, PhD, a psychologist who has lived with the physical decline that comes with his diagnosis of facioscapulohumeral… Read More »
Embrace your experience
by Lori Brant There were two ways to walk with my walker down the hallway to my condo. The first way kind of went like this: “Man, I am tired…. Read More »
Making the Most of the Holidays
A Gift You Give to Yourself! by Leigh Reynolds, FSHD Society Celebrating the holidays can be emotionally draining for many, but for those with a chronic condition like FSH muscular… Read More »
Walking in water – mindful movement through difficult times
by Jennifer Egert, PhD, New York City I had a picture in my head: swimming in a pond at the base of a waterfall. Six months after the arrival of… Read More »
YouTube series on interabled relationships
Meet Jenny and Tony, our new FSHD University “adjunct professors.” Jenny and Tony are a married couple who share information and offer encouragement on their YouTube channel in the context… Read More »
FSH Society Radio on Living, Loving, Caring, Sharing
Join us via Facebook Live on Wednesday, April 24, at 9:00 pm Central / 10:00 pm Eastern time (note change of time) for our conversation with Drs. Ora and Isaac Prilleltensky… Read More »
For newly (and not so newly) diagnosed people
We have published a new e-brochure, “Not Alone,” by Kelly Mahon Hessler. Based on interviews with a wide range of FSH muscular dystrophy patients, parents, and partners, this e-brochure assures… Read More »
Don’t let this diagnosis limit you
When one path ended, a new one opened up by Nelson Dronet, Sulphur, Louisiana I would like to take a moment to share my story in the hope that it reaches… Read More »