By Ed McGrath
My wife Marilyn has dermatomyositis, diagnosed in 2008. Her dermatologist initially thought she had lupus, but two years later she finally saw a rheumatologist who knew exactly what Marilyn was suffering from. “The Man,” as I call him, now manages Marilyn’s myositis treatment, and we often touch base with him about meds prescribed by her other doctors who don’t understand myositis.
Once we recovered from the shock of Marilyn being diagnosed with a rare disease, we learned all we could about DM. That’s when we joined TMA and began attending the TMA conferences. I consider myself a “care partner” as opposed to a “caregiver,” because we’re a team. We fight this disease together.
As her partner in this disease, I watch for telling signs. I notice when Marilyn gets fatigued, for example, or when her right eye starts to droop. When her skin flares, I know to draw a circle around the rash to see if it’s spreading, which means things are getting worse. I know how to lift her out of a chair, and I know when she needs rest.
When Marilyn was first diagnosed, we talked with our children about what myositis means and the impact it would have on all of us. The biggest disappointment for Marilyn was having to give up taking care of our young grandchildren. She no longer had the mobility or the energy needed to safely care for them. Instead, we started spending time with the kids through Sunday family dinners and attending their school and sports events, even if we had to watch from the car. Most of our grandchildren are grown now, but they still look forward to those Sunday dinners, as do we.
Myositis has challenged us but also helped us to focus on what’s really important. Before myositis, we enjoyed being active: exercising, traveling, dancing, and entertaining. Myositis took a lot of that away, but we learned to adapt, finding ways to still do things we enjoy.
We started traveling again, calling ahead to check for accommodations with handicap access and no stairs. When we go to the beach, I set up a tent so we can still enjoy the sand and surf. We even dance, albeit from a sitting position.
The decision to sell our two-story home and move into a one-floor townhouse was really difficult. Without the big yard, even the dog felt that one! But one-floor living made life easier for us. We installed a high toilet and walk-in shower and added a large patio with an awning so Marilyn can be outside without risking a flare from the sun.
Before we joined TMA, we’d never met another person with myositis. Thanks to TMA’s Annual Patient Conferences, though, we’ve met so many others who are in our position. We’ve even had conversations with some of the leading myositis experts in the field. Marilyn has become her own advocate, and I’ve met, learned from, and shared with others who care for someone with myositis. We now, and will forever, consider these fellow members of the myositis community our friends.
And we’ve learned so much through TMA. When we heard about new treatments like IVIG, we shared that information with “The Man.” We’re fortunate that our medical partner, her doctor, was open to trying new treatments. IVIG has made it possible for Marilyn to wean off prednisone and methotrexate after seven long years.
As a husband, father, and profesional, myositis has affected me personally in many ways. I’ve always made decisions based on how it will affect Marilyn and our family, so when she first got sick, I took early retirement. It’s tough sometimes, because I’m a very outgoing person. When I went back to work part-time, I laid down the ground rules with my employer: my schedule had to be flexible.
The toughest thing I struggle with is watching Marilyn’s pain and loss and not be able to fix it. I like making people smile or laugh; it’s good medicine, and I tend to use humor as a way to cope and communicate.
Marilyn and I are always looking and hoping for a cure. But we will continue to fight, we won’t let myositis win. And I will always be Marilyn’s care partner.
Ed and Marilyn McGrath have been committed members of TMA for more than a dozen years. They live in Troy, NY and are the proud parents of three children and six grandchildren.
This story first appeared in the Winter 2023 issue of TMA’s quarterly magazine The Outlook.