Screaming Without a Voice: The Reality of the "Bridge to Care" Gap
- 2 days ago
- 2 min read
I’m sharing this update from my hospital bed because "lived experience" isn't just a buzzword for me—it’s my autobiography.
Recently, I had to push through extreme pain and a "silent" voice in the ER to get the testing I knew I needed. The results showed my jaw had shifted and infection had set in, leading to emergency surgery. But the hardest part of this journey hasn't just been the medical crises; it’s been the battle for my reality to be acknowledged.
The Truth of the "Bridge to Care" Gap:
Financial Erosion: I have faced the crushing weight of debt and had to get rid of my car just to survive.
The Shelter Barrier: I have experienced homelessness and the terrifying reality of being told there were no shelter beds available. The system is largely designed for domestic violence, substance abuse, or serious mental illness—leaving the medically fragile in a "referral loop" with no place to land.
The Advocacy Tax: I have had to defend my disability status not only to fight for affordable housing near my medical facilities but to the people closest to me. I've fought the "you’re too young" or "you don't look sick" narratives while my life was being stripped away.
Stigma and Survival: I waited three years to apply for Social Security because of that stigma. I went through bankruptcy because I was told I was "using the system."
This is why I advocate. I don't do this for titles or nonprofit status; I do it because no one should have to expose their entire being just to be believed. We live in a world where a rare disease patient shouldn't have to experience homelessness to prove they are in need.
If you are fighting to be seen—whether by a doctor, a caseworker, or your own family—don’t stop. Speak up even when you have no voice. Your survival is proof enough of your purpose. ✊🎗️
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