Melissa Wilder’s journey with dermatomyositis has been long, winding, and marked by extraordinary resilience. Before myositis entered her life, she was someone who embraced possibility—so much so that she once auditioned for American Idol, a testament to her spirit and willingness to chase big dreams.
Her earliest symptoms emerged quietly but ominously: rashes, sores on her scalp, and a growing sense of weakness. What followed was a staggering twenty‑year search for answers. During that time, her condition affected nearly every part of her life—her relationships, her sense of identity, and the way she related to her own body. She learned, sometimes painfully, that rest wasn’t optional and that honoring her body’s limitations was necessary for survival.
Dermatomyositis touched every corner of Melissa’s world. Once a nurse who thrived in a hands-on role, she found she could no longer continue her work in the same way. But she discovered that being a nurse didn’t depend solely on physical ability; she could still use her knowledge, compassion, and experience—just differently. The disease affected her cognition, her singing voice, her memory, her mobility, and even her ability to be out in the sun. Physical endurance vanished, replaced by overwhelming fatigue and neuropathic pain. Medications were often intolerable, and her mental health was tested in ways she had never imagined. Still, she fought, learning to advocate fiercely for herself and to educate others about what living with myositis truly means.
Throughout this journey, Melissa’s family and community stepped in as powerful advocates. They worked to reduce daily stressors, ensure her pain was managed, and maintain communication with the many services involved in her care. They championed her mental health, supported disability accommodations, and helped coordinate physical and occupational therapy. They fought for at‑home services and made sure her environment was accessible and supportive. Their care created a safety net that allowed her to focus on healing and stability.
Melissa’s medical team has been another cornerstone of her strength. Her primary care provider, dermatologist, rheumatologist, neurologist, physical therapist, interventional spine and pain specialists, cardiologist, OBGYN, and even state programs in Connecticut have all played essential roles. Together, they have battled insurance hurdles, protected her autonomy, monitored risks, and set realistic long‑ and short‑term goals. Most importantly, they believed her—something every patient with myositis deserves.
From her experience, Melissa wishes every future physician understood that “normal labs” don’t equal a healthy patient. Myositis presents differently in everyone, and symptoms—especially rashes and weakness in women—must never be dismissed. She urges medical professionals to remember the immense mental health burdens that accompany chronic illness, to collaborate with one another, and to always listen with compassion.
The Myositis Association (TMA) has been a crucial source of support for Melissa and her family. Through TMA, they found hope, diversity, open‑mindedness, and a community that truly understands the complexity of dermatomyositis. Online connections with others living with myositis have strengthened her family’s resilience and reminded them that they are not facing this rare disease alone.
Melissa has also become a powerful advocate herself. As both a nurse and a patient, she has begun sharing her story and educating those around her—friends, healthcare providers, and others in her rural Connecticut community. She sees an opportunity to shine a light on the realities of life with a rare disease and to bring awareness, hope, and humanity to the conversation. She is committed to “highlighting the reality of navigating life with a rare disease and the hope we carry”—a mission she embraces with strength and grace.
In navigating daily life with myositis, Melissa has relied on her faith in God as the basis for hope and ability to be resilient. She has learned that predictability is rare, and pacing is essential. She recommends embracing naps, humor, comfortable spaces, journaling, and spending time in nature and with animals. For her, acknowledging the disease doesn’t mean giving in to it—it simply means recognizing it and navigating life with clarity and honesty.
To others walking their own myositis journey, Melissa offers heartfelt encouragement:
The small wins count—a lot. You will meet incredible people who will impact your life in ways you never expected. Accept help. Embrace your grace. And keep on keepin’ on.