Maybe I talk about MG because I want to remember who I am despite it

Three years after my diagnosis with myasthenia gravis (MG), I made the decision to stop introducing it at the same moment I introduced myself to someone new. It was one of the best decisions I made, until I realized recently that I’d simply postponed sharing that information until my second or third meeting.

This realization came to me because I recently started seeing a new psychologist, and I spent the entire first session explaining how I successfully manage to live with MG, even though that was not actually the reason I went to see her. It made me laugh afterward because I realized how deeply this condition has become part of the way I present myself, even when I am not consciously trying to talk about it.

It also made me think about my professional life. I run a digital marketing agency, and whenever I meet a new client, I somehow find myself talking about MG during the second or third meeting, at the latest. It technically has no place in a professional, distant relationship. I mostly work remotely, and MG rarely affects the quality of my work because I plan everything ahead, build extra time into my deadlines, and delegate when I need to. Yet somehow, I still feel the need to tell them.

So do I have a sense of pride at living with MG?

The short answer is yes. I may not be proud of MG itself, but I am incredibly proud of everything I manage to do while living with it. That is an incredible story to tell, and sometimes I simply want people to know it, even at the risk of looking unprofessional. Honestly, I don’t care that much about how it makes me look anyway.

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Having to explain

It’s even more intense with family and friends. I probably mention it at least once during every gathering. I will say, “Yeah, this workshop might be fun, but I can’t. I have MG.” Or, “Oh, you’re doing great at the gym! I wish I could do the same intensity, but, you know … MG.”

Sometimes I hate myself for doing it because I don’t want to add another thing to my plate: processing their reaction. While the people around me are incredibly understanding, I can sometimes sense pity or confusion in their eyes, especially when they see me doing yoga or going to the gym. They look at me as if they are thinking, “What are you talking about? You seem totally fine.”

And so, instead of drowning myself in an endless cycle of explanations, I have decided to internally reward myself every time I talk about MG. If I express it, it means I felt the need to express it. Maybe sometimes I simply want a little tap on the shoulder, a reminder that I am dealing with a lot, and that behind my smile, my dedication to work, and my apparently huge resilience, MG still hurts. It is still a big deal to live with.

A rare bright side

So I will give myself that tap.

I am learning that I don’t have to justify every mention of my illness. I don’t have to make it educational every time. I don’t have to convince people that I am sick enough to talk about it. Sometimes I can simply say, “I have MG,” because it is part of my reality, and I am allowed to acknowledge my reality without turning it into a courtroom.

And this might be one of the rare bright sides of MG for me: Sometimes it makes me proud of myself. Sometimes it even makes me feel happy about who I am. I see it as a kind of peeling of emotions, layer after layer, because living with something that constantly makes me uncomfortable has pushed me far outside my comfort zone.

Maybe that is why I keep talking about it. Not because I want MG to define me, but because I want to remember who I am despite it. And if, once in a while, I need to give myself a little tap on the shoulder and say, “Hey, you’re doing a lot,” I think I have earned it.

Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.