A New View

According to experts, reframing your perspective on life can help conquer the anxieties or depression that can accompany living with neuromuscular disease

by Donna Shryer on January 5, 2015 - 9:21am

Quest Winter 2015

Even a quick search online will turn up all manner of white papers, analyses and studies that identify a higher risk of anxiety and depression among individuals living with chronic disease and physical disabilities — such as those associated with many types of neuromuscular disease.  

For instance, the American Psychological Association states that depression is one of the most common complications of chronic illness and estimates that up to one-third of individuals with a serious medical condition experience symptoms of depression. Similarly, the American Sociological Association concludes that physical disability is associated with significantly increased risk for depression, regardless of gender or age. 

Clinical psychologist Danielle Sheypuk

Few would dispute that living with a physical disability — whether it’s from a form of muscular dystrophy or cardiovascular disease — can trigger anxiety or depression. But it’s essential to remember that these feelings are not physiological symptoms of such diseases; they’re byproducts of living with those diseases and any associated physical disability. 

Take muscle disease: Repercussions of losing muscle tissue and gaining muscle weakness can include feelings of loneliness brought on by social isolation, fear of the future and mourning the loss of what you pictured the future might look like. In addition, some people are predisposed to mood disorders regardless of physical health. “Depression relates to a host of factors, and you should never assume that anxiety or depression is a natural part of the disability,” stresses Danielle Sheypuk, Ph.D., a New York-based clinical psychologist who also has spinal muscular atrophy (SMA).

Keep it in perspective

For many diagnosed with a neuromuscular disease, an essential phase in corralling any stressful thoughts and mental gremlins in one’s head is finding a realistic perception of reality. “That means accepting your illness, acknowledging the stresses that come with muscular dystrophy, and then finding a perception of reality that fits you as a person,” says Jos Hendriksen, Ph.D, a clinical psychologist based in the Netherlands and the creator of the award-winning documentary “Duchenne with a Future — The Power to Live.” 

Hendriksen’s documentary follows six successful gentlemen, all living with Duchenne muscular dystrophy (DMD). While the subjects profiled have each lost physical capabilities, they use their losses as an opportunity to redefine reality and grow into a realistic life path — and in each case find a bright future. In terms of the challenges they face, and the successes they ultimately achieve, these documentary subjects are inspiring examples — precisely because they have so much in common with many in the MDA community. 

Brent Gillespie

For Brent Gillespie, of Benton, Ark., who received a diagnosis of limb-girdle muscular dystrophy (LGMD) in 1993 at the age of 17, taking control and changing his perception of reality meant learning to see his wheelchair as a means of liberation. 

“When I lost my ability to walk and moved to a wheelchair, I was pretty depressed,” Gillespie, 38, recalls. “In time, though, I learned that my wheelchair opened a world of opportunities. Now, as long as there’s a ramp, I go wherever I want. It took me a while to see it, but my wheelchair gave me freedom.” 

In fact, Gillespie’s revelation so soothed his depression that he headed straight online to share his experience with others. Today, he continues on that path by blogging for MDA’s Transitions Center and actively engaging with others in the MDA community via social media. 

“Someone posted on the MDA Facebook page that they were now in a wheelchair and their world was falling apart. I wrote that it’s not the end at all; it’s the beginning. This person could barely walk a month ago, but now, with his wheelchair, he can go, go, go. Expressing that reality was fantastic,” Gillespie says.

Making the connection

One reality of life with neuromuscular disease involves the loss of mobility, which can trigger feelings of social isolation and, consequently, anxiety and depression. And pushing yourself to get out of the house isn’t always the solution, stresses Maria Dischiavo, 27, of Dallas, Texas. Dischiavo, who received a diagnosis of facioscapulohumeral muscular dystrophy (FSHD) when she was 10, explains that isolation goes deeper than being stuck at home. It’s more about feeling lonely, she says, which is why she sometimes feels loneliness just as sharply on a crowded street. 

“I see all these able-bodied, seemingly happy people, and that, too, can trigger loneliness. It feels like nobody understands my situation. It’s something I struggle with.” 

When her struggle gets too heavy, Dischiavo, like Gillespie, turns to writing and blogging as a therapeutic outlet. Plus, through her MDA Transitions Center blog posts, Dischiavo says she’s able to connect to others who do understand her situation. 


“We share experiences, ideas and burdens,” she says. “I think that every burden feels less heavy when there are many hands carrying it, so connecting to the MDA community, as a blogger and through social media, gives me invaluable strength and support.” 

Sheypuk agrees that the Internet offers a wealth of opportunities to decrease loneliness and increase quality of life. “When we find ourselves stuck at home, there’s Internet dating, chat groups, social media, Skype, FaceTime — all ways to stay connected and socialized.” 

And when you want to rev up social interaction but you’re not into loud restaurants filled with able-bodied people — as Dischiavo sometimes struggles with — Sheypuk advises, “Throw a party. Invite friends to your home, where you’re comfortable.” 

Back to reality

Another strategy to combat isolation and the anxieties it can bring — which can be more pronounced in the winter months when weather and other factors keep us all more homebound — is to change your perspective on what it means to be alone. For example, instead of seeing alone time as lonely, try giving these periods of inactivity a positive spin, Sheypuk advises: “Enjoy your downtime. Embrace it. Write that article you’ve always wanted to write. Take an online course. Develop that business plan you’ve been thinking about. Instead of thinking I’m stranded, remind yourself that this is only temporary.” 

Or, use the downtime for healing meditation, suggests James Kelley, 45, who received a diagnosis of FSHD in 1980. Kelley resides in Cincinnati, Ohio, and is living on his own for the first time, which originally made him anxious — until he learned that time alone offered him an opportunity to really relax and express himself without macho reservations. “I think men in general don’t want to show their emotions, so support groups don’t always work,” Kelley says. “But being on my own from time to time allows me to reflect and meditate. If I want to cry, I cry. I express out loud what I want to, and it’s over. I cope with things a lot better now.” 

On the flip side, Brandon Schaffer, 22, uses moments of solitude as time to rock out. In his home, which he shares with his fiancée, Schaffer deals with a rare and as of yet undetermined form of congenital muscular dystrophy. He was diagnosed 18 years ago, and while doctors tried to pinpoint Schaffer’s neuromuscular disease, he opted to distract himself from the stress of not knowing what was wrong by learning to play the drums. 

“Naming what I have won’t change anything, but it is frustrating and it has caused me anxiety over the years,” Schaffer explains. “I found that doing something creative — and for me that’s playing the drums — is one way to shake the anxiety out of my head. Since I’ve dealt with anxiety on and off for most of my life, I’ve had plenty of time to practice. I’m pretty good now.”

A brighter future

If working through feelings of social isolation and loneliness becomes unbearable at any point, or if you find yourself growing obsessively fearful of the future, it’s important to seek professional help. You may be headed for depression. Although depression is a complex issue, it often adheres to this general guideline: Loneliness tends to present as a need to reach out and connect to others, even if it’s a struggle to do so; conversely, depression tends to make people withdraw, and choosing seclusion indicates a need for medical intervention. 

“Experts can help you look at your feelings in another way — as opportunities for change — and if necessary, prescribe medication if it’s too difficult to handle anxieties or stress with your own energy,” says Hendriksen. 

When seeking mental health care, be it a psychologist, psychiatrist, therapist, counselor or group therapy, Sheypuk suggests looking for an expert with experience treating clients with physical disabilities. “I think it adds a deeper understanding. For example, you may want to talk about sitting next to a new romantic partner on the couch, but you’re worried about transferring from your wheelchair and getting situated. What if your head falls back or you lose your balance? If you use a wheelchair, a simple move to the couch takes strategic planning. It’s nice to have someone who understands those details,” she says. 

Your trusted mental health expert also may suggest medication to help smooth the tough edges. Although, Schaffer adds, taking medications to treat anxiety disorders or the anxiety associated with depression sometimes adds to your list of anxieties. “It’s a stigma that you need to get over,” he says. “I’m not a big prescription person, but I have something — if I need it. I just don’t talk about it. And it doesn’t make me crazy. Whether it’s therapy, support groups, school, medication, you have to do whatever helps make the most of who you are. Doing anything less, well, to me that’s what is crazy.”  

Live for today

When her clients feel overwhelmed with gloom and doom about the future, Sheypuk likes to remind them that such thoughts are just predictions — not unalterable facts — and predictions are not realities. “One of my tips,” she says, “is to stay mindful and live in the present moment. It’s about using all your senses and focusing on living your life the way it is today.”

It’s not easy, Sheypuk adds, but with help from loved ones, friends, and mental and health professionals who are skilled in the diagnosis and management of neuromuscular disease, you’ll be more open to the pleasant events just as likely to happen. 

“Along with the negatives, positives are coming, too. And some of these positives may surprise you,” she stresses. “They could include dating, marriage, childbirth or a career change — anything is possible. It’s important to remember that.”  

Exactly how to cope with persistent anxiety, stress and especially diagnosed depression associated with neuromuscular disease is best determined in consultation with a dedicated mental health professional. That’s not to say that a loving parent, significant other or dear friend doesn’t count, but they’re not trained in diagnosing and treating mental burdens and barriers.

Here are several resources to help you or your family locate trained experts in mental health issues.

MDA Clinics: Since 1950, the Muscular Dystrophy Association has been helping individuals and families confront the daily challenges of living with muscle disease, which makes your local MDA clinic an invaluable primary resource to find support groups and more. MDA clinics utilize a multidisciplinary team approach, meaning individuals can see knowledgeable health care specialists from a variety of disciplines, all at one location. Many MDA clinics have physiatrists and psychologists available. In other cases, your MDA clinic can refer you to appropriate specialists. In either case, the clinic is a good first stop for mental health care.

Substance Abuse and Mental Health Services Administration: The U.S. government established SAMHSA in 1992 to make substance use and mental disorder information, services and research more accessible.

EP magazine: As a dedicated resource for “exceptional parents,” ep magazine is dedicated to developing, translating and sharing information as tools for positive change for the special-needs community. 

Psychology Today: Psychology Today’s Therapy Directory is a detailed professional listing by ZIP code for psychologists, psychiatrists, therapists, counselors, group therapy and treatment centers in the United States and Canada. 

Your health insurance provider: Most health insurance providers have access to lengthy lists of mental health providers that specialize in such areas as anxiety disorder and depression.

Donna Shryer is a freelance writer in Chicago.

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