Tanya Chiu, an MG patient advocate, shares the challenges of life with a disease that could be eased if patients are willing to discuss them with loved ones.
Transcript
Isolation, I find is a big one that kind of creeps up on you. I was a person that was super social and always around people. And I find that I’m isolated a lot.
None of my friends have any chronic illnesses, and they have different energy than I do now, because I always have to consider the amount of time I’m going to be out.
If there’s a bathroom close by, like there’s a lot of things, there’s incontinence. Oh, I could just go on and on and talk about this one, honestly.
The other one that I find that not a lot of people really even speak about now is intimacy with your partner. Because when you have myasthenia gravis, depending on how your body is feeling, if you’re not feeling physically well, most of the time you’re not going to want to be intimate with your partner.
So that’s a huge thing for the problem of if you are with a partner and you are just not intimate.