Retha De Wet, an MG patient advocate, shares why people living with MG deserve more than just survival and should speak up about their quality of life.
Transcript
Stop thinking that you don’t deserve to have a normal life. That’s the main thing that’s kind of helped me is because I was just surviving.
I was not thriving, and I felt like surviving should be enough. But it doesn’t have to be.
Of course, when you’re in the midst of an MG crisis, yes, take surviving. But when you’re focusing on your long term treatment, you also deserve quality of life, and you deserve to do the things that bring you joy.
And if you’re not going to speak up about that, it’s not going to happen. So, I mean, doctors can also only work with what you tell them.
So if you’re just as I did, going along with everything and being grateful that someone’s not dismissing your diagnosis or someone’s not gaslighting your symptoms, then you’re not really going to get the treatment you deserve, even if it is adequate treatment.
So I think fitting things into your lifestyle starts with you acknowledging that you deserve that.
