Trying to Stay Positive When Living with Myasthenia Gravis

One of the hardest things to do when living with any chronic health condition is trying to stay positive. I was diagnosed with seronegative myasthenia gravis (MG) about 2 years ago at the age of 59, but I have had symptoms that started at the age of 10.

Over the years, my symptoms slowly progressed, each new flare bringing up more symptoms. Now I know that's not always the standard way MG presents, but we all are different. From my understanding, the juvenile form of MG can act differently than adult-onset, with more flares and remissions.

Where do you get your energy from?

Pretty much all my life I have wondered how anyone had enough energy to go and do things. As a child and young adult, just about everybody I knew seemed like their days, evenings, and sometimes nights were jam packed with plans. Besides their regular classes for school, they were off to this sporting event or that concert. It didn't matter whether they were participating or just spectators.

I on the other hand, had given up any extracurricular school activities by the tenth grade. because it was just way too hard to keep up. I did have a part-time after school and weekend job. On the weekends if I wasn't at work, I sat at home and usually practiced making frosting flowers. Sometimes I joined my parents in the living room watching TV while my brothers were out with their friends.

This was normal for me. No one ever questioned why I was so "antisocial." Believe me, it wasn't because I didn't want to go out. I now know it was from the fatigue of myasthenia gravis.

Young adulthood and MG

As a young adult, I tried to work. But again, that's just about all I did. I was way too tired to do anything else. And as far as dating, well that was 1 night a week, maybe. Very seldom did I stay out past midnight. After getting married and becoming a mom, I still only had so much energy. As for my housekeeping ... well, my house was lived in! Somehow it always did get cleaned from top to bottom at least twice a year.

But somewhere along the way, without even knowing what was going on, I became okay with not being very social. I just wanted to know what was wrong with me that I couldn't keep up and have some sort of a social life.

Being true to myself

I still wonder what it is like to have a life that's more than just existing. But here's the thing I found that helps the most: Even though I still wonder, I do not to base my life after somebody else's life because everyone's life is totally different.

I acknowledge that I have gotten to experience a simple life that in today's world most people never get. I am learning to congratulate myself on my small accomplishments and not to worry if anybody else sees them or not.

Also, I have gotten comfortable saying "no" to people. No excuses, no reasons, just a simple "no," thereby setting down healthy boundaries that have helped me reserve my energy. Especially with the diagnosis of myasthenia gravis.

I have found that the people who really do care about me truly understand that I physically cannot keep up with the demands every day. So, I try to stay positive by being true to myself!