Michelle Gonzaba, of San Antonio, Texas, was diagnosed with myasthenia gravis (MG) in 2011. She advises her community on how to handle discussing new bodily limitations with those who don’t understand the fluctuating nature of MG symptoms.
Transcript
So I think for patients and caregivers, you know, people who don’t fully understand, I think I used to be very defensive about it. I’d get angry like, “I’m telling you this is what I can and cannot do. Why don’t you understand?”
But then I would realize before I had MG, I didn’t know anything about it. I had no clue about it. So I think kind of the patient or the caregiver coming into the situation, just understanding that usually those people are not coming from a bad place.
So not being defensive about it, but just being like, “Hey, you know, with whatever I have, sometimes day to day, it can just fluctuate with how tired I am or my fatigue, you know? Like maybe last week I was doing really well, and then this week, it’s not a great week for me.”
And I think another thing too is maybe trying to relate it back to them. So if they’re like, “Well, I don’t understand, you know, you used to be like this, but now you’re like this, I don’t get it.”
Be like, “Think about the worst flu you ever had in your life, OK? And how tired you were. Well, I feel like that times 10 right now. So just think about it.”
And maybe they’ll be like, “Oh, OK, OK.”
Like kind of maybe relating it back to them might help them understand without you having to go into like a full explanation as to what the disease is and how it works.
