There’s no sugarcoating it when MG leads to stolen dreams and sorrow
It's been one of those months when positivity isn't enough
June was an intense month for me. With the rising heat, my muscles are growing weaker, and with a packed work schedule, my mental health is starting to fall apart, too.
Recently, I shared a story about an experience that made me realize one of the few benefits myasthenia gravis (MG) has had on my mental health. Ironically, that same experience came back to hit me like a boomerang.
The story began when I joined a jogging team on a mountain trail. I didn’t last more than two minutes. I returned home, cried, and went straight to bed. The only comforting part was that my sister was with me, and she couldn’t keep up, either. Later, I found out that two friends had also struggled, which reassured me that the trail was hard — it wasn’t just me or my weak body.
Some time later, one of my friends invited me to go back to that mountain to walk instead of run. And it worked. I was so happy to feel a sense of achievement. It wasn’t the full trail, but it was something. And for once, that something was enough.
My sister, however, took a different approach. She started training twice a week on flat surfaces, preparing to go back and conquer that mountain like the run club did. I won’t lie — I was jealous. I knew it was too intense for me to follow.
Last week, she did it. She ran the entire thing, an 18-km urban trail, from 6 p.m. to 10 p.m. I was so proud of her, so genuinely happy. But also, so deeply sad. Sad for myself, for my body, for my goals, and for the dreams I keep rewriting every time myasthenia gravis says no.
At the finish line, she hugged me and cried. “We made it,” she said. But in my head, all I heard was, “Sarah will never make it.” Why? Because MG will never join the dance.
Usually, this is the part where I’d tell you, “Don’t worry, I’ll make it next year by running, walking, or even crawling!” But not today. Today I say that 18 km will literally destroy me. My breathing and my legs will never get me through it, no matter how hard I train. And that realization hurts.
It hurts that my ambitions aren’t dependent on my will. That I can’t join a joyful event with my sister. And the most heartbreaking part? My entire emotional outcome depended on whether or not she would share her win with me. Because honestly, if she hadn’t said “we” made it, I would’ve been crushed.
I usually try to find solutions. But with this one, I only find sorrow. It feels like I’m burying my dreams and my capacity along with this failure. Still, I know I’ll go back to that mountain. I’ll walk it, over and over again, until my heart reaches peace and finds satisfaction in the small victories.
I try to remind myself that even healthy people can experience the same type of failure. Maybe they didn’t have the mental strength to train, maybe they lacked the time, or maybe they got injured during the run. But the truth is, this isn’t about others. It’s about my own body failing me. It’s about MG choosing to be bitter again today.
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.
About the Author
Joerg Koehler
As much as I appreciated your description of the few benefits MG has on mental health, I thank you even more for sharing your experience with a backlash like this. It´s true, MG hits like a boomerang again and again. Dealing and coping with these hits may be the real challenge.