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When I was diagnosed (Nov. 2021) I knew I needed to accept my disease, but I also knew I needed to be careful not to become my disease or let it overwhelm me or become the focus of my life.
I don’t like the idea of thinking of my relationship with MG as a battle, a fight, or any other kind of conflict. For me looking ahead to a life of fighting, battling, being in conflict, or trying to overcome my incurable disease was really stressful and quite depressing. I thought viewing my disease in this way would sentence me to a lifetime of stress, and that stress would certainly exacerbate my disease and it wasn’t a way I wanted to live.
I realized that my disease was part of me just like my sense of humor, my way of thinking, or the way I view life. I’m not in battle or conflict with those, I use them to make my life more enjoyable—we’re partners in this life we share. At that point, I decided to make myasthenia gravis a life partner rather than a life enemy in this dance I call life.
Since then it’s certainly been an interesting dance. I have to admit that it leads most of the time, but now and then I get to take the lead. Sure MG is a challenging partner, but when I look at the relationships around me, they’re all challenging at times or in some ways. And just like with my other life partners sometimes I get mad at my disease, frustrated with it, and sometimes really, really sad because most of the time (all the time?) it doesn’t seem like we have the same goals for my life.
However, shifting my perspective and realizing that I’m learning a new dance with a new partner has allowed me to have a better perspective of my disease, allowed me to work with it, helped me manage my health, and given me a certain sense of control. That’s nice.
And, as I’ve gotten to know my partner and when I really pay attention to it, it lets me know when it’s time to rest, not to do too much (always!), and when I can do a little extra. I’m trying to learn to view MG as a friend, a life companion, and a dance partner as I travel through life.
This attitude which is not always easy to maintain, has made my journey with this disease a bit more palatable, and even fun sometimes. Again, I’d rather spend my life with a sometimes troublesome friend than an enemy. Thanks for asking!