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Living with myositis is not only a physical challenge—it is deeply emotional. New research presented at the 2026 Global Conference on Myositis (GCOM) by TMA and in partnership with Keenova Therapeutics sheds light on the mental health experiences of people living with this rare disease and the strategies they use to cope, adapt, and advocate for themselves.
Drawing from qualitative surveys and patient journey research, these findings offer an important reminder: supporting mental health is essential to improving quality of life for those who live with myositis.
A Heavy—and Often Invisible—Emotional Burden
Across both studies, participants described significant emotional strain associated with myositis. Patients reported feelings of grief, fear, and uncertainty as they adjusted to a life that can change suddenly and dramatically. The transition from being healthy to managing a chronic illness was often described as “jarring,” with many patients struggling to reconcile their previous identity with new physical limitations.
Compounding this challenge is the fact that myositis is often an “invisible” disease. Because symptoms are not always outwardly apparent, individuals frequently feel misunderstood—not only by the public, but sometimes even by healthcare providers and loved ones. This sense of isolation can worsen mental health challenges already elevated in rare disease populations.
TMA surveyed members during Myositis Awareness Month 2025. Results showed that about 39% of respondents experienced depression and 44% experienced anxiety. This is significantly higher than in the general population.
I felt like I might be dying, and I could not say that out loud or even admit it but knew it at the same time, and I felt like no one understood how I felt and I could not expect them to understand. – Molly
Another key theme is the emotional toll of navigating treatment. Patients often cycle through powerful medications with difficult side effects, leading to ongoing worry about long-term outcomes and quality of life. Some participants expressed feeling caught between physical health and mental well-being, particularly when treatments that improve disease symptoms may negatively affect mood or mental clarity.
In addition, limited familiarity with myositis among some healthcare providers can leave patients feeling unsupported or unsure about their treatment options.
Building a Mental Health Toolkit
Despite these challenges, patients are actively developing strategies to manage their mental health. TMA’s survey identified several commonly used tools:
- Sleep management (38%)
- Therapy and/or medication (30%)
- Mindfulness practices such as meditation or journaling (30%)
- Exercise or physical therapy (24%)
- Social support networks (21%)
Participants also highlighted the value of nutrition, time outdoors, self-compassion, and creative outlets as part of their coping approaches. Importantly, many respondents emphasized treating mental health with the same level of attention and discipline as physical health—recognizing it as a core part of overall well-being.
One of the strongest and most consistent findings is the importance of connection. Respondents repeatedly pointed to support groups, online forums, and peer communities as vital sources of understanding and encouragement. Spaces like TMA’s Support and Affinity Groups help reduce isolation, allowing people to share experiences, exchange practical advice, and feel seen by others who truly understand life with myositis. Families and care partners also benefit from these networks, gaining tools and support to manage the emotional demands of caregiving.
Advocacy and Education as Empowerment
Both studies highlight a growing desire among patients to become strong self-advocates. Many expressed the need for better education—not only for themselves, but also for healthcare providers and the broader public.
Respondents want:
- Clear, accessible information about myositis
- Greater awareness among clinicians
- Better integration of mental health into routine care
- Support in communicating effectively with their healthcare teams
This emphasis on advocacy reflects a broader shift: individuals are not just managing their disease—they are actively shaping their care and the future of the myositis community.
My Advice: Educate yourself. Even if you have a myositis-literate specialist, they won’t have time to teach you everything. Understanding your disease is empowering. – Sarah
Taken together, these findings underscore a critical message: mental health must be treated as an essential component of myositis care—not an afterthought. Living with myositis affects every aspect of a person’s life, from physical function to identity, relationships, and emotional well-being. Addressing only the physical symptoms leaves a large part of the patient experience unmet. Supporting mental health—through education, connection, and integrated care—is key to improving outcomes and helping people with myositis not just live, but thrive.
See the posters here:
Mental Health Coping Strategies Practiced by People Living with Myositis: Results of a Qualitative Survey DOWNLOAD
Myositis Patient Journey Qualitative Research and Co-Creation DOWNLOAD
Download TMA’s e-Book – Community Tips: Myositis Resources and Support DOWNLOAD
