MyoCon! September 24–27, 2026.
Choosing Persistence Every Day
By Joan Reid
I am a geriatric nurse, and caring for others has always been part of who I am. In fact, most of my friends are at least ten years older than I am. I have always enjoyed spending time with seniors, learning from their experiences, and supporting them through life’s challenges. I never imagined that one day I would face a life-altering health challenge of my own.
My first symptoms were muscle weakness, extreme fatigue, and overwhelming lethargy. Almost overnight, simple tasks became difficult. I found myself repeatedly visiting hospital emergency departments, searching for answers. Fortunately, I received a diagnosis of necrotizing autoimmune myopathy within about a month, but that diagnosis was only the beginning of a very difficult journey.
Myositis changed every aspect of my life. It severely affected my ability to care for myself and manage daily activities around my home. Things I once enjoyed, like gardening, became impossible. The disease affected not only my physical health but also my emotional well-being, social life, and self confidence.
One of the hardest moments came when my daughter started her first year of university. I was so sick that I could not help her settle into this important new chapter of her life. Instead, she was forced to watch her mother become helpless and bedridden. It was a traumatic experience for both of us.
There were times when I truly believed I would not survive. My health declined so dramatically that I began giving away my clothes and selling my furniture because I thought I was preparing for the end of my life. Looking back, it was the most devastating period I have ever experienced.
Support came from many places, but it also taught me difficult lessons. In the beginning, friends rallied around me with overwhelming kindness. As time went on and my illness persisted, some friendships faded. Chronic illness can be a long road, and not everyone is able to walk that road beside you. Through it all, my Christian faith became my anchor. Protecting my mental health and nurturing my spiritual life became just as important as managing my physical symptoms.
I am grateful for my medical team, whose members continue to work together to manage my complex care. My doctors have done their best to navigate a disease that is still unfamiliar to many healthcare providers. As a nurse, I wish every medical student received education about myositis before entering practice. This disease does not always look like other illnesses, and recovery rarely follows a predictable path. Greater awareness could lead to earlier recognition, more compassionate care, and better outcomes for patients.
The Myositis Association has also been an important part of my journey. Receiving a scholarship to attend MyoCon 2025: TMA’s Global Myositis Patient Conference was eye-opening. The education was invaluable, but perhaps even more important was meeting people who understood exactly what I was going through. Myositis can be very isolating, and those connections reminded me that I was not alone.
Today, my health is much better than it was during those darkest days. Although I have experienced relapses and periods of rehabilitation, I am beginning to engage more actively in advocacy efforts. I have spoken with my myositis specialist about the possibility of organizing a patient education day in Canada. I hope to help raise awareness and support others facing this rare disease.
If there is one lesson myositis has taught me, it is the importance of being intentional. Be intentional about your therapies, even when progress is slow and difficult to see. Keep moving, even on the days when you do not feel like getting out of bed. Accept your limitations but challenge them gradually. Aquatherapy, hot and cold therapy, and a positive mindset have all helped me along the way.
To anyone living with myositis, my message is simple: don’t give up. There will be good days and bad days. There may be times when you feel alone. But persistence matters. Keep fighting, keep believing, and keep taking the next step forward, no matter how small it may seem. My journey has taught me that hope is stronger than fear, and that even after the darkest moments, it is possible to find a way forward.
Joan Reid lives in Brampton, Ontario, Canada.
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