Finding strength in the shadows

February 18, 2025February 18, 2025 Category: Patient Stories

By Tesse Muldoon

Myositis has had a profound impact on my life in many ways. After seven years of odd skin rashes and a number of other autoimmune conditions, I was diagnosed with cancer-associated dermatomyositis in 2017, and it drastically changed my path. Before becoming disabled, I was a certified nursing assistant (CNA) and was in the process of testing into nursing school. My diagnosis forced me to step away from my career and rethink how I navigate daily life.

Physically, myositis affects my muscles, energy levels, and overall mobility. Simple tasks that others take for granted—like standing for long periods, gripping objects, or even just getting through a full day without exhaustion—can be incredibly challenging. I rely on at-home IVIG infusions (Privigen) to help manage my condition, and I have to be mindful of how I use my energy to avoid flares.

Emotionally and mentally, it’s been a journey of resilience and adaptation. While my illness took away my ability to work in healthcare, it also opened doors for me to become an advocate. I’ve turned my experience into something meaningful by writing my book, SpoonieNinja: Finding Strength in the Shadows, and creating content to support others with chronic illnesses. My advocacy work, including being featured by the Autoimmune Association, has allowed me to connect with a community that understands these struggles.

While myositis has taken a lot from me, it has also reshaped my purpose. I now focus on educating, inspiring, and supporting others who are navigating their own chronic illness journeys.

Navigating myositis has been challenging, but I’ve been fortunate to have support along the way. Whether it’s friends, my online community, or those who understand the chronic illness journey, having people who listen, encourage, and uplift me has made all the difference. Advocacy and connection have played a huge role in my journey, and I’m grateful for those who stand by me, whether in person or through the incredible chronic illness community I’ve found.

Managing cancer-associated dermatomyositis requires a team effort, and I’m grateful for the medical professionals who help me navigate this complex disease. My care team includes specialists like rheumatologists, neurologists, and dermatologists who monitor my condition and adjust treatments as needed. My infusion providers play a crucial role in administering my at-home IVIG (Privigen), which helps manage symptoms and prevent flares.

Beyond medical treatment, having a knowledgeable and compassionate team makes a huge difference. They help me advocate for the right care, adjust medications based on my needs, and provide guidance on managing daily symptoms. Living with myositis is a challenge, but with the right medical support, I’m able to maintain as much stability as possible.

The one thing I wish every medical student knew is the importance of truly listening to their patients—especially those with chronic illnesses. Textbooks can teach symptoms and treatments, but they don’t prepare you for the lived experiences of patients who battle complex, often invisible conditions every day.

For those of us with rare or misunderstood diseases like cancer-associated dermatomyositis, it’s exhausting to constantly need to prove that our symptoms are real and not just anxiety or exaggeration. A doctor’s willingness to listen, believe their patients, and approach treatment with compassion can make all the difference. Medicine isn’t just about treating a disease—it’s about treating the person living with it.

TMA has been an invaluable resource for me on my myositis journey. When I was searching for answers and had exhausted all available treatments, I found myself facing a refractory disease with no clear path forward. During that uncertain time, TMA provided me with the guidance and support I desperately needed.

Through TMA, I was able to connect with experts who understood my condition and could offer insights on what steps to take next. Their resources, advocacy, and ability to connect patients with knowledgeable specialists gave me hope when I felt out of options.

Living with a rare disease like cancer-associated dermatomyositis can be overwhelming, but knowing there is an organization dedicated to research, education, and patient support has made a huge difference for me and so many others.

One of the most useful daily hacks for managing myositis is energy conservation and strategic movement to reduce muscle fatigue and inflammation. Here are some specific tips:

• The 80/20 rule for energy: Try to use only 80% of your energy and save 20% to prevent overexertion. Pushing too hard can trigger a flare.
• Adaptive tools and mobility aids: Don’t hesitate to use assistive devices like grabbers, shower chairs, or walking aids to reduce strain on weak muscles.
• Hydration and electrolytes: Staying well-hydrated, especially with electrolytes like Liquid IV or Pedialyte, can help reduce muscle cramping and fatigue.
• Compression and heat therapy: Compression gloves, braces, or heating pads can help with pain and circulation, especially in the morning when stiffness is worst.
• Gentle movement and stretching: Low-impact exercises like water therapy, resistance bands, or even simple stretching can maintain mobility without overexertion.
• Meal and task prep on good days: Batch cooking, using adaptive kitchen tools, or setting up essentials in easy-to-reach places can make tough days easier.
• Voice-to-text and smart home devices: If muscle weakness makes writing or gripping difficult, use voice-to-text or smart home tech to reduce physical strain.

Words of encouragement: Living with myositis is a battle, but you are stronger than you realize. This journey comes with challenges—pain, fatigue, uncertainty— but you are not alone. There is a whole community of warriors who understand, who fight alongside you, and who believe in you.

Some days will be harder than others, and that’s okay. Rest when you need to, advocate for yourself, and never feel guilty for prioritizing your health. Your worth is not measured by your productivity or what you ‘used to do’—you are enough exactly as you are.

Even on the toughest days, remember: you are resilient, you are seen, and you are never fighting this alone.

Tessa Muldoon, known online as SpoonieNinja, is a passionate advocate for chronic illness awareness and a volunteer advocate for The Myositis Association. By her side every step of the way is her beautiful service dog, Riley (a Siberian husky), whom she trained herself. Riley is not just a working dog but also her loyal shadow, providing support and companionship through every challenge.

Follow Tessa’s journey and advocacy work:
📌 Instagram & Threads: @teslasfightingchance
📌 TikTok: @teslasfightingchance & @SpoonieNinja
📌 YouTube: SpoonieNinja
📌 Linktree: linktr.ee/TeslasFightingChance