Background/Purpose: My journey with dermatomyositis (DM) began abruptly in July 2024, when I was hit by sudden, severe muscle weakness after a GI infection. I couldn’t stand or move my legs- I was terrified, my body was failing, and I didn’t know why. I was admitted to the hospital for inpatient rehabilitation for 2–3 weeks. Despite lab results suggesting myositis, I was discharged without a diagnosis or treatment plan. I felt invisible. I was advised to follow up with a neurological clinic, but after multiple unreturned calls, I decided to take control. 

As a public health professional and medical student, I knew how to navigate healthcare systems, but nothing prepared me for how dehumanizing it would be to have my symptoms dismissed. I was scared and exhausted—not just physically, but emotionally. However, with my primary care provider’s help, I was prescribed prednisone. My strength returned briefly, and with it, hope. But when the taper ended, so did my progress. My body was falling apart again, which prompted me to seek a more comprehensive diagnosis.

Intervention: Determined not to be ignored, I became relentless. I used Myositis Support and Understanding (MSU) resources to advocate for myself. I had to educate doctors, those I trusted with my care, about how DM presents, especially in people with darker skin. At one point, a specialist brushed off my symptoms—my fear turned to fury. I knew something was wrong, and I wouldn’t let their indifference invalidate my lived reality.  

Finally, I found someone who listened who was out of state. Under Dr. Arash Hassan’s care, guided by labs, clinical presentation, previous skin biopsy, and dilated capillaries, I was formally diagnosed with DM and referred to NIH for further evaluation. That moment was a turning point for my health and my spirit. 

Maintenance: The emotional toll remains. I still grapple with fatigue, fear of flare-ups, and the memory of being dismissed. That experience changed me. It motivated me to advocate for myself and to ensure no other patient has to fight this hard to be heard. I am now MSU’s Director of Public Health and Policy, where I intend to enhance policy and research around chronic diseases like myositis.  

Quality of Life: I’m no longer bed-bound. Through physical therapy, prednisone, azathioprine, IVIG, and continued care, I’m slowly rebuilding my strength. More importantly, I’ve transformed pain into purpose. Through MSU, I’m advocating for reproductive rights, equitable access to care, and better provider education about rare diseases like DM.  

Takeaway: This journey taught me the importance of self-advocacy and the need for providers to listen to patients who are navigating rare, complex diseases like DM. Diagnostic delays don’t just harm the body—they fracture trust and deepen emotional suffering. My story is one of resilience, but it shouldn’t have required so much self-advocacy to be believed. We must build a healthcare system that centers the patient’s voices. When we listen, we heal more than just symptoms; we restore dignity, trust, and hope. By empowering patients and fostering a strong doctor-patient relationship, we can improve outcomes for those with rare diseases like mine.  

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/when-the-body-speaks-but-no-one-listens-a-dermatomyositis-story-through-a-public-health-lens/