Kristina Kelly, a patient advocate, shares how understanding doctors’ communication preferences help her to self-advocate for her MG care.
Transcript
What I like to do and what I tell other patients to do is to approach your provider, your doctors, with hardcore facts.
I like to say, “Speak their language.” I know being sick, and having MG myself, is very emotional. I’m not saying that there’s not a lot of feelings involved.
But I don’t necessarily take those feelings and emotions to my provider as my plea, or my evidence that “Hey, this plan is a little too status quo — it’s not sustainable. I feel like I’m getting worse and I’m not getting better.”
I like to use health tracker apps. With, not with your symptoms and with possible triggers so I can go to my provider and I can say, “OK. I have been on X, Y, Z medication for six months. According to my health tracker, my fatigue is 20% worse, my weakness is 25% worse, and ptosis has increased by 15%.”
Go to them with data. Go to them with science — with facts. And say, “I would really like these three areas improved. Can you help me understand what treatments we haven’t explored yet? And which ones should we put at the top of the list?”
