Hollie Amadio was diagnosed with hereditary angioedema at 25 after first experiencing symptoms at 16 and later with multiple sclerosis. She shares how self-advocacy helped her find answers.
Transcript
I didn’t trust myself or want to take the time to question the vague answers or the uncertainties.
Oftentimes, like when you don’t know, the doctor’s not always right; you just don’t know that it’s OK. You feel timid to question the doctor’s answers or lack thereof.
So I wasn’t confident enough to be able to speak up like, “Hey, OK, well, you all don’t know. You haven’t known for this many years. This many times a year. You know, you haven’t known. So where do I find who does know for the next time?”
I never challenged anything. I just took what it was and let it be.
Advocacy isn’t confrontation. It’s more like a collaboration. It’s a collaboration to find the answers and find the care that you need and move forward so that you can live a better quality of life.
