MyoCon! Rate increases on August 28th!
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.
I am so proud of you. I’ve watched you from before the diagnosis through the diagnosis to being back up on your feet and the independent woman that you have always been. It knocked you down for awhile but you got back up stronger and wiser than ever. I will continue to say watching you helped me get through my medical crisis. Please continue to share your story and inspire others.
Thank you so much! My story is not over by any means.
Thank you for always telling me my story matters and to keep going!
While I don’t have this specific auto immune disease, I as well have learned the importance of patience and planning ahead when it comes to activities and not physically pushing myself beyond certain points. I have Rheumatoid Arthritis which not a form of arthritis but instead an autoimmune disease and pushing myself beyond a certain point usually results in extreme pain and fatigue the following days sometimes weeks after. Praying for a cure and sending healing and positive energy your way
You got this! Take it one moment at a time because sometimes the day is even too much!
Daughter of mine! The moment you were diagnosed, I knew this disease did not have a chance in hell of winning!!! Since birth you have been determined to be YOU!! Keep shining!! Keep pushing!! So proud to be your mom!!
Love you mommy thanks for being by my side
Thanks mommy for being side during this whole journey! Love you
After many years of suffering and being misdiagnosed
I now have been diagnosed with fibromyalgia. My body and mind has taken me through so many changes. It is very difficult to get doctors to understand the pain I suffer when all my bloodwork shows nothing wrong. It is so depressing. Your story lets me know others are fighting so I must do the same
Yes please fight and advocate for yourself! Your pain is real.
Thank you for sharing your story Dee, as I had never heard of it until you were diagnosed. Ironically, although it’s rare, I am starting to realize there are people who didn’t have a diagnosis as swiftly, which can furthermore complicate treatment plans and lifestyles.
I love you Sis! Keep advocating for this, people out there need more of your bravery.
Thanks sis! Love you too.
Thanks sis! Just hoping my story will help someone else.
Thanks for sharing ❤️🙏🏾
Thank you for the support.
Thank you for the support!
Thank you for sharing your story! I am so happy that God is giving you the strength you need to keep pushing. Please do not give up! I’m praying for you, your family and your medical. May God bless you!
Thank you for reading! I appreciate the support and prayers.💙
Thank you for the support.
Real life superwoman
As someone who also suffers with chronic illness and pain your article was both insightful and inspiring. Advocacy is amazing work, and much appreciated. I went to school with your mother since grade school and hearing how well you’re doing makes me so happy for you and your entire family. ♥️
I appreciate your support 💙
The resiliency displayed in this article is nothing short of amazing and very encouraging to others. Keep going! You are a true warrior!
Thank you for your kind words!💪🏽
Thank you for your kind words!💪🏽
I didn’t even know i could leave a comment! I love you Sis 5tarr! You my real life Shero! I’ll never forget the night at the anniversary party you stood up and danced with us for the first time after being diagnosed! I’m proud of you and look up to you more than you know!
Thank you so much for sharing your story with us, Deidre. Watching you navigate your myositis journey and adapt to a completely new way of life has been incredibly inspiring. We’ve witnessed only a small part of what you’ve been through, so I can only imagine the strength, courage, and resilience it has taken to keep moving forward each day.
I am beyond proud of you—not just for sharing your experience so openly, but for the grace and determination you’ve shown through it all. Thank you for allowing us to learn from your journey. We’ll be here to support and cheer you on every step of the way. We love you so much. ❤️
💙 thank you so much!
I have this exact disease. I have come a long way in the three years since my diagnosis. Thank you for keeping others aware. It is important that people understand autoimmune diseases.