Ari Maayaan: Managing fear of missing out with MG
Ari Maayan, of Albuquerque, New Mexico, is a biotech innovator and former Marine. He was diagnosed with myasthenia gravis (MG) in 2016. He shares his advice for those who feel socially excluded while hospitalized.
Transcript
An MG patient, when hospitalized — the first time it happens, I don’t know, maybe the second time it happens — eventually you get to the point where you recognize that it doesn’t matter what’s going on outside. It doesn’t matter what you’re missing and what you think you’re missing.
There’s only one thing to do and one thing only. You gonna get through this? You’re gonna have to focus. You’re going to have to focus on what you need to do for your body and letting everyone in the medical community that’s dealing with you, tell them exactly what’s going on with you and what you need. Because they’re not — they may think they know what was happening with you, but the only person that knows what’s going on with you is you.
And the only way you’re gonna get through it is for you to focus, focus, focus. And you’re gonna have to stay focused on who you are and what’s going on with you — and to hell with the outside world and trying to get through to the people who are dealing with you and think they know what you’re going through. And guess what? 90% of the time, they do not.
So you should be driving this horse and carriage. You better — you better, because sooner or later, you’re not gonna make it if you don’t run the show.
Recent Posts
- Data from trial of experimental CAR T-cell therapy for gMG due in early 2027
- 3 things I learned that helped me come to terms with my MG diagnosis
- Real-world use of gMG treatment in US mirrors patterns seen in trials
- Can you love someone without being their caregiver? I say, yes, you can.
- Early IgG drops may signal response to generalized MG therapy, study finds