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
The Reinventor | A Short Film by Jared Jacobsen“The Reinventor” is a biopic, directed by Jared Jacobsen, that details the many transformations Amy Bekier has made while living with FSHD. The film has won Best Document Short Film at the Makizhmithran International Film Festival. Amy Bekier is an award-winning painter, member of the FSHD Society’s Board of Directors, and founder of the San Diego chapter. This moving film offers a portrait of Amy’s life and is a story of compassion, loss, and resiliency.
Filmmaker Jared Jacobsen has also volunteered with the FSHD Society for many years, and his film studio, Stephen Jake Video Productions, is named after his late father, Stephen Jacobsen, who had FSHD. “The Reinventor” premiered in October at the Silver State Film Festival in Las Vegas.
Wellness Hour: Staying warm with FSHDAs the weather gets colder (at least in the northern hemisphere), we turn to a subject that is the bane of many person with FSHD: keeping warm. Not to mention those unfortunate hazards of freezing weather, snow and ice. Loss of muscle mass makes it harder to maintain body heat. Dr. Mark Tarnopolsky of McMaster University, an expert in neuromuscular disease, sports physiology and exercise, joins us to provide a scientific and medical perspective on this topic.
The Wellness Hour is open to everyone in the FSHD community. Our monthly Zoom meeting is held on the second Monday of each month at 5:00-6:00 pm ET. This is your time to enjoy the company of fellow FSHers, share challenges, talk about what works for you, and feel validated and supported in whatever you may be going through.
To join our monthly Wellness Hour Zoom meetings, visit The Gathering Place on our website, where you can find a variety of online communities that fit your needs and life stage: https://www.fshdsociety.org/gathering-place/
Resilience and FSHDDr. Kent Drescher is a psychologist whose FSHD has enriched his perspective on psychological resilience in his career working with veterans with PTSD. Dr. Drescher spoke about Resilience and FSHD in our August 2022 FSHD University webinar.
Dealing with life’s slings and arrows alongside FSHD may feel like a lot, too much at times, for a person to deal with. Mental health researchers have long focused on factors that increase a person’s risk of developing mental health problems. Many of these are environmental circumstances that an individual can’t do much about. But what about people who thrive despite having many stressors in their lives? What is resilience, the human ability to withstand stressful circumstances and regain normal functioning?
Kent Drescher, PhD, shares recent research on a factor that people do have control over, which contributes to resilience.
Keep up-to-date on our educational webinars through FSHD University here: https://www.fshdsociety.org/fshd-university/
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 »
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 »