Finding Strength Through Advocacy

July 6, 2026July 6, 2026 Category: Patient Stories

By Deidre M. Champion

Before myositis became part of my life, I was always active. I used to run track and compete in hurdles, and I spent a lot of time at the gym. When I first started noticing weakness in my hips, I never imagined it could be a rare autoimmune disease.

Simple activities began to feel much harder. Getting in and out of a car, climbing stairs, and even getting out of bed became a challenge. I also noticed that after exercising, I was much more sore than usual and needed extra days to recover. At first, I assumed it was years of athletics catching up with me. Myositis was the last thing on my mind, especially since I’d never heard of it.

Thankfully, my diagnosis came relatively quickly. Within a matter of weeks, I received an accurate diagnosis of immune-mediated necrotizing myopathy (IMNM), a form of myositis. While I was grateful to have answers, the diagnosis marked the beginning of a journey that would change nearly every aspect of my life.

Physically, it has changed how my body functions impacting my strength, mobility, and endurance. Things that once seemed simple now require more planning, more energy, and more patience. Living with a chronic illness means constantly adapting to new limitations while trying to maintain a sense of normalcy.

The disease has affected me emotionally as much as it has physically. There have been moments of frustration, grief, and uncertainty as I’ve had to come to terms with how much my life has changed. The unpredictability of myositis can make it difficult to plan ahead, and the challenges of managing healthcare appointments, work responsibilities, and everyday life can sometimes feel overwhelming at times.

Myositis has also placed a strain on my marriage and my finances. Chronic illness brings pressures that many people never see medical expenses, changes in work capacity, and the emotional burden that both partners carry. My wife has been one of my greatest sources of support throughout this journey. Together, we have learned how to communicate better, adapt to changing circumstances, and support one another through difficult days. 

I have also been fortunate to find support within the myositis community. Connecting with people who understand what it means to live with a rare disease has helped me feel less alone. Being able to share experiences, ask questions, and learn from others has provided encouragement and a sense of belonging during some of my most challenging moments.

Managing myositis requires a coordinated healthcare team, but I have learned that patients play a critical role in their own care. Much of the day-to-day monitoring and advocacy falls on us. I track my symptoms, pay attention to how my body responds to treatments, and make sure I stay informed about my condition. I have learned to ask questions and advocate for myself when something does not seem right.  

One important part of my treatment has been infusion therapy. The support I have received from my infusion provider has helped make a difficult treatment process much more manageable. Their compassion and professionalism have made a real difference in my experience.

My experience with myositis has also fueled my passion for advocacy. I have used my story to help raise awareness, educate others about rare diseases, and support people who are newly diagnosed. I have spoken at patient centered events and created resources, including a coloring and workbook titled: “Mindful Moments Activities Workbook for Myositis and Chronic Illness Warriors” designed to engage and support individuals living with myositis. My goal is to help others feel seen, understood, and empowered.

One thing I wish every medical student knew is that no two myositis patients are exactly alike. Patients deserve to be heard, and their symptoms should be taken seriously. Those of us living with myositis are experts in our own condition because we manage it every day. When healthcare providers treat patients as partners in care, everyone benefits.

The Myositis Association has also been a valuable resource for me. The educational webinars have helped me better understand the disease and feel more connected to the myositis community.

If I could offer one practical tip to others living with myositis, it would be this: pace yourself and listen to your body. Planning ahead and tracking symptoms can help you better understand your limits and recognize patterns in your health.

Most importantly, I want others to remember that they know their bodies better than anyone else. You are the expert on you. If a treatment plan is not working, speak up. Ask questions. Advocate for yourself. Living with myositis is not easy, but we are stronger than we often realize, and we do not have to face this journey alone.