Charlotte, a cardiology nurse living with myasthenia gravis (MG), shares how her diagnosis shaped her career and perspective on care. She reflects on the slow onset of symptoms, the challenges of nursing school, and the importance of self-advocacy, rest, and transparency in the workplace.
Transcript
My name is Charlotte. I’m a registered nurse. I work in cardiology. I’ve been a nurse for about three years now, I want to say. And I have myasthenia gravis, which is an autoimmune disease. It affects your, you know, neuromuscular junction and can cause you to feel weak.
Specifically for me, my symptoms were a lot in my voice and, like, my face. And then I had like hand and leg weakness as well.
Getting diagnosed was not an easy process for me. Slowly over time, my symptoms started to progress. So it went from just, like, feeling a little off to not being able to open water bottles to not being able to put my hair up. I had to, like, make all these adjustments in my daily life to be able to do these little things. But that became so normal for me because it happened so slowly over time.
And then — you know — by the time I was like a late teenager and then getting into college is when things started to get really bad. I was in the hospital a lot. But then, you know, after getting my diagnosis, I decided that I wanted to become a nurse because my nurses were so helpful to me throughout my treatment process and diagnosis process.
And I do come from a family of health care providers as well, so that maybe played a part in it. But, you know, ultimately I chose nursing rather than PA, doctor, or anything like that because nurses are really the ones that you talk to the most, and they’re really patient-facing. And they made the biggest difference for me.
I was really nervous to become a nurse. I didn’t feel like I could do it. It was a whole new world for me, because I got diagnosed, treated, and essentially I decided to go right into nursing school. And so nursing school was very scary for me.
It’s not going to be the easiest thing in the world to go into the health care profession. Especially nursing, when you’re on your feet a lot, you’re talking a lot, you’re doing a lot of, you know, tactile things, especially if you work on the inpatient side. So I’m not going to lie and say it was an easy thing to do.
The biggest thing that I learned is to take care of yourself first. And, you know, everybody says that in nursing, like, you can’t take care of others until you can take care of yourself. But truly, with any autoimmune disease, I think especially MG, and especially when it comes to working as a nurse, you really do have to take care of yourself.
I knew I wanted to work inpatient on the floor for experience and also it just interested me. I really liked it when I was in nursing school. And within the first six months, it just unfortunately wasn’t for me. I was flipping day shift and night shift a lot, and I was someone that just wanted to help everybody.
I always said yes when they said, “Would you pick up this shift? Would you do this?” I just wanted to be a really good nurse and that got in the way of me taking care of myself, for sure.
So if it weren’t for my own experiences, I feel like I wouldn’t be that good. Like, I’m not that good of a nurse, but I just don’t think I would be as good of a nurse. I think that my experiences really shape the way that I, like, see my patients and care about my patients as well.
I think a really important thing now for me is to make sure that I tell people that I have it, just in the event that I can’t do something or whatever. And I — and I think part of that probably comes from the fact that I spent so much of my life with the symptoms and nobody knowing what was going on — that now, it just is much better when people know about it.
And you don’t have to share it with everybody. But I think, especially as a nurse, it’s helpful because if you get into a situation at work where you really need a coworker to help you with something, and it seems like a really weird task or something that is like, “Why wouldn’t you be able to do that?” It’s helpful for it to just be out in the open.
And I also think that — then people ask you, “What is that?” And then you get to talk about it. And it’s important to spread awareness about it, in my opinion.
