Danita LaShelle Jones, who lives in Madison, Alabama, is a caregiver to one of her four children, Ladybug, who lives with hereditary angioedema. She encourages patients to pause and ask questions during appointments, reminding them it’s OK to seek simple, clear explanations that make medical information easier to understand.
Transcript
There are some of us that go to our doctors when we’re trying to understand the science behind hereditary angioedema — HAE — and you may be getting the big scientific words. You may be getting models that you don’t understand. You may be getting things on the screen that they don’t really explain, or they may be giving you the mechanisms behind medications that you can’t pronounce.
I encourage you to stop the doctor in their conversation. It is OK to stop them at that moment and start to ask questions. Ask them what certain names mean. Ask them what is in those medications. Ask them to explain it to you as if you completely don’t understand.
My sister is a doctor, and one of the things I absolutely love is that she will take some of her patients sometimes and say, I’m going to take this. I’m going to break this information down like you’re in the second grade. And that is what I encourage you to tell some of your doctors — hey, break this down to me like I’m in the second grade.
Explain it to me as if I am a person that is truly needing to understand — in a basic way — what is going on inside of my body or inside my patient’s body. However you need them to do it.
It is OK to ask them to make it simple for you. And if you find yourself in a situation where maybe the doctor discovers that they don’t understand the information, you can go to them and say, hey, I read this on the website, what does this mean? Or I read somewhere that this is what I should expect. Is that true?
And the more you have conversations with your doctor, the more you are able to understand what is going on. It is all important that we all work together in this journey of hereditary angioedema, not just so that there’s surviving — so that our patients and our loved ones can live with minimal challenges from day to day.
