Coping Through a Crisis

(Editor’s note: In the print edition of Quest Issue 1, 2020, Sarah Clark-Stoney, MSW, LSW, was misquoted. Her quotes have been clarified here, and updated in the full, downloadable PDF version of Issue 1, 2020.)

Fifteen years ago, my family lived through Hurricane Katrina in Louisiana. At the time, our son was a freshman in high school. Falling pine trees and rain destroyed half of our home. Rebuilding took seven months, and we lived in the chaos during the process.

At the time, I was fairly independent. Because I have Charcot-Marie-Tooth disease (CMT), I used a small power wheelchair and drove a wheelchair-accessible van.

Fast forward to today: I no longer drive, and I need assis­tance with showering, transferring to a bed, and dressing. I’m often home alone, because my husband, a nurse who works in a hospital, is my caregiver, and our son lives across the country.

Again, we’re living through a different kind of destruction. While our home is intact and secure, the danger of the novel coronavirus has gripped the nation and changed our way of life.

Fear is normal

Functioning in the world often feels like a precarious balancing act. For those of us with a neuromuscular disease, disruptions are difficult and require continually adapting and finding new ways to cope. Whether you are dealing with a pandemic or another stress-producing event, how you respond affects your physical, mental, and emotional well-being.

“Regardless of the type of crisis — whether it is a pandemic, a hurricane, a job loss, or the loss of a loved one — anything out of the ordinary is going to rock your boat a little bit when you have a chronic medical condition,” says Teri Brister, PhD, LPC, director of information and support at the National Alliance on Mental Illness (NAMI).

“Two big causes of fear are encountering things that are unknown and feeling out of control,” Dr. Brister says. These feelings are normal. One of the best ways to respond is to take control of what you can. For example, take stock of your prescription medications and request a refill for anything you are running low on.

“There’s a whole other layer of fear because you have a health issue,” Dr. Brister says.

Worrying about your caregiver becoming ill is a legitimate fear. Working on solutions might be scary or present new challenges, but creating an action plan can help you regain a sense of control.

Coping strategies

Every person needs an individualized strategic plan for coping with stressors.

“One simple technique is to acknowledge that you are feeling anxious and that it’s a completely appropriate response,” says Sarah Clark-Stoney, MSW, LSW, a social worker at the Children’s Hospital of Philadelphia. “Dismissing these feelings can allow anxiety to compound.”

A good coping strategy is to engage in a project that is meaningful to you. Think of things you like to do that you’ve been putting off, and experiment with outlets that take your mind off stressing. For example, immerse yourself in a good book, listen to music, participate in chair yoga, complete a jigsaw puzzle, or write in a journal.

Your fears are not irrational, and you are not going to make them go away. But instead of dwelling on “what ifs,” Dr. Brister suggests, ground your thoughts by thinking about a person who is important in your life or a place where you feel relaxed and safe. Call upon these images when you feel distressed.

Combating isolation

Having a network of friends, family, and neighbors who support you is crucial. If a crisis affects a large group of people, portions of that network might crumble. Be willing to ask for and seek help when you need it. For example, join a social media group such as Nextdoor to connect with people and businesses in your community that are offering support. If you belong to a place of worship, let them know you need assistance. You can also ask the MDA Resource Center about support organiza­tions in your area. (Call 833-ASK-MDA1.)

Even if you don’t live alone, you might feel iso­lated during times of social distancing. Make a point to speak with a family mem­ber or friend every day. Stay in touch with members of your social groups virtually using Facebook, Zoom, or Skype. Join in on MDA’s Game Night, which is a wonderful way for kids and teens to interact online in a safe environment.

“It’s essential that we find a way to get connected. We get support from each other,” Dr. Brister says.

When to seek a professional

“When you need to consult a therapist looks a little different for everybody,” Dr. Brister says. “Do you want to stay in bed and pull the covers over your head? Let’s be real: Everybody has days like that from time to time. However, if that has gone on for several days or a week, it’s a good idea to talk with somebody.”

Says Sarah, “We can feel as though we are trapped when forced to stay inside. Restore some calm by looking to nature. Sit by an open window or take an activity outdoors. Connecting with nature can be very restorative to your mental health.”

Finding this connection can offer a much-needed mental break. “Many of us are deeply connected to our technology, especially now. We’re working from home, streaming our shows, texting our friends, and video chatting,” Sarah says. “When you go out­side, allow yourself to take a break from technology. Try to be present and mindful, focusing on the sounds and sights of nature.”

Manage media intake

Communication, particularly news, is important. However, if you can’t stop watching television or checking your news feed because you are afraid of missing the latest information, anx­iety is controlling you instead of you controlling the anxiety.

Limit how much time you spend reading and watching media. Be especially mindful of what children might overhear.

During a crisis, everyone feels afraid and anxious. These are normal responses.

“Make yourself get up, make yourself go outside, and make yourself do something,” Dr. Brister says. “Surviving any catastrophic situation depends upon your resilience.”

Barbara Twardowski and her husband, Jim, a registered nurse, live in Louisiana. Together, they write about accessible travel, disability issues, and health topics.

Help Children Handle Stress at Home

When the world goes topsy-turvy, the family is a child’s support system. Here are tips for keeping home a calm, safe place.

• Encourage open discussion. Don’t discourage kids from asking questions, and provide age-appropriate answers. Parents should never dramatize a situation; children emulate their parents.
• Stick to a routine. Following a regular schedule as much as possible gives kids the comfort of knowing what’s coming next.
• Be consistent. Children’s anxiety can manifest as misbehavior or physical symptoms, such as tummy aches. Continue to maintain house rules and set limits on kids’ behaviors. “Consistency and structure are like a security blanket for your child during times like these,” says Sarah Clark-Stoney, MSW, LSW, a social worker at the Children’s Hospital of Philadelphia.
• Connect with peers. Just like adults, kids need social interaction. When you can’t meet in person, schedule virtual chats with friends and family.
• Engage with nature. If you can’t get outside, try growing herbs or a tomato plant in a pot. Or observe the birds in your backyard and try to identify them using an app.
• Cherish your time together. Extended time at home presents an opportunity to introduce new family rituals, such as a family video journal, or to try something new, like sleeping in a tent in the backyard.

Get Support

The National Alliance on Mental Illness (NAMI) provides mental health support and resources. Call the NAMI HelpLine Monday through Friday, 10 a.m.-6 p.m. ET, at 800-950-NAMI (6264) or email info@nami.org.

Emergency Resources

MDA wants to give you the knowledge and resources to cope with any emergency. For COVID-19 resources, visit mda.org/covid19. For emergency preparedness resources, visit mda.org/emergency-resources.