By Harvey Toews
My journey with myositis started with something simple but strange: pain in my glutes. It didn’t seem like much at first, but it lingered, grew, and eventually pushed me into a long search for answers. It took 18 months before I was finally diagnosed with immune-mediated necrotizing myopathy.
Before all this, I was incredibly active. Golf, hiking, travel, pickleball, kayaking—you name it, I was doing it. Myositis changed that. These days, I need help with daily activities, and I rely on a walker or wheelchair for mobility. It’s a big shift, and I won’t pretend otherwise.
But I haven’t faced it alone. My family, my partner, and the support agencies here in Maine have been terrific. Their encouragement and practical help have made the hard days easier and the good days even better.
My care team has been just as important. We truly work as a team. Their knowledge, compassion, and commitment have made a real difference in how I manage this disease.
If I could tell medical students one thing, it would be this: Myositis is rare, and it can be profoundly debilitating. Recognizing that early—and taking patients seriously—matters.
TMA has also played a big role in my journey. They connected me with a specialist in Boston and introduced me to a community of people who understand exactly what I’m going through. That sense of connection is powerful.
If I had to offer one practical tip, it would be this: Be a strong self‑advocate. Educate yourself. And take care of your whole self—physical, mental, and emotional.
This disease affects every part of you, so your care has to be just as holistic.
And finally, for others who must walk this road, here’s what I want to say: Stay present. Be here now. Don’t dwell on the past or what you’ve lost. Seek joy and love wherever you can, and stay connected to the people who matter.
Please make a gift today to help TMA support and encourage people like Harvey.
Your generosity makes all the difference this Myositis Awareness Month!
TMA hopes to raise $80,000 for Myositis Awareness Month – please help us reach our goal!
