In life with MG, even small battles can feel overwhelming
Sometimes just brushing my hair seems impossible due to pain
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Sometimes, it feels like I’m cursed with an invisible form of myasthenia gravis (MG) whose symptoms still puzzle doctors, whose presence sometimes makes me doubt my own feelings, and whose complexity is difficult for many to grasp.
Even small obstacles can feel overwhelming. No matter how hard I try to stay strong and face everything with dignity, MG never fails to crush my hopes.
I’ve worn my hair short since I was 19 (I’m 28 now) — not because I prefer the style, but because my curly hair demands strong arms to brush and detangle in the shower. I simply can’t manage it. If I let it grow to shoulder length, I get excited about longer hair, only to end up in pain after every shower. Sometimes, I leave my hair tangled for weeks because lifting my arms long enough to brush it is impossible.
Sitting on stools is another challenge. Without back support, my neck is left unsupported. It might seem like a minor detail, but when your head suddenly becomes too heavy for your neck, even sitting on a simple stool is exhausting. Most people wouldn’t imagine a 28-year-old facing this kind of daily struggle, yet it’s my reality.
Writing can also become impossible. After two paragraphs, my fingers drop the pen over and over, as if holding it were as difficult as lifting a mountain.
Making small adjustments
The good news is that there’s almost always a solution somewhere. Small adjustments can make living with MG easier. For example, I use the voice transcription feature on my phone when I need to write long texts.
I’ve learned to place stools near a wall so I can rest my back and support my neck. I also try to find some fun in styling short hair, rather than seeing it only as a limitation. MG shouldn’t always have the final word.
The most painful part is when others don’t recognize these constant, small challenges. It hurts, even though I know my feelings shouldn’t depend on other people’s opinions. I remind myself that people usually believe only what they can see, and their perceptions are shaped by their own experiences and biases.
What helps most is talking about my feelings or writing them down. Sometimes I interact with artificial intelligence, sometimes I record myself on my phone, and sometimes I simply let my thoughts run through my head. Expressing what I feel, even in small ways, helps turn emotions into something real and manageable. It validates my experience.
When I do this, I judge myself less and allow myself to see situations differently. That small shift in perspective can transform pain and frustration from a problem into the beginning of a solution.
Seeing MG as a giant enemy is probably the worst strategy. But facing its challenges one by one, exploring solutions step by step, and taking small actions can be incredibly relieving. Sometimes, it lifts a huge weight off my chest.
Like any challenge in life, there’s no perfect guidebook. The key is to keep trying, keep adapting, and keep believing that we can regain control of our minds and bodies — even when living with a disease that often feels unpredictable.
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.
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