It’s Rare Disease Awareness Month, and most people don’t even know it.
In this deeply personal episode of Chronically Able, Elisa records from a flare, laying in the dark, and shares what living with multiple rare autoimmune diseases actually looks like.
She goes beyond just naming her diagnoses and explains what they do:
•What Myasthenia Gravis is and how it affects muscle communication
•How Systemic Lupus Erythematosus creates systemic inflammation and unpredictable flares
•Why Sjögren’s Syndrome is more than “dry eyes” and how it impacts dental health and finances
With clear percentages and real-life examples, Elisa sheds light on how rare these conditions truly are, and what it means to live in a statistically small, often misunderstood space.
This episode also covers:
• What autoimmune flares feel like
• Why rare disease diagnosis can take years
• How to advocate for testing and referrals
• The invisible financial burden of chronic illness
• Why visibility and education start with us
If you’re living with a rare disease, still searching for answers, or supporting someone who is — this conversation is for you.
Rare doesn’t mean dramatic.
Rare doesn’t mean invisible.
And if you want to share your rare disease story on Chronically Able, the guest interest form is linked in the show notes.
You are not alone.
You are seen.
You are Chronically Able.