The dynamics of writing about my life with myasthenia gravis

Writing this column is the best job I’ve ever had. It gives me the chance to cry my heart out every week about a situation that nobody around me truly understands. I can have a peaceful exchange with complete strangers about a chronic problem we have in common: myasthenia gravis (MG).

I’ve explained in the past how healing writing has been for my soul, and how much it has helped me slowly accept the fact that I will forever be sick.

That being said, I realized something recently: People around me in my daily life don’t really read my columns, except for my fiancé. At first, I was sad about that, but later I realized that I’m actually grateful, for two reasons.

It gives me freedom

One reason is that I feel like I can be myself without limitations. I can speak about intimate topics like my period, my relationship, my breakdowns, my fears, and my frustrations.

The funny part is that Bionews, the parent company of this website, is headquartered on a different continent than where I live, which somehow makes me feel comfortable enough to completely dissect MG without limits.

I love letting my mind wander through every possible perspective of chronic illness and discovering, through comments, that people from the other side of the world relate to it. I truly believe that sharing is healing.

It protects them

I think it also protects them in a sense, not from me, but from the cataclysm of invisible disability. Accepting that a person who looks healthy can still be disabled is difficult for some people.

So, in a strange way, I’m relieved that people around me don’t have to read about how hard it can be to lose my breath, how painful it is to feel left out, or how terrified I sometimes am about my own body.

MG, of course, always “reads” alongside me. It helps me write. It helps me suffer. It helps me heal. It helps me evolve. And it helps me advocate.

So I guess it became my most loyal reader, my harshest critic, and my greatest inspiration, all at the same time.

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.