Myasthenia Gravis: Looking for Recognition of the Fight

If you see some one with a bandage or a cast, you wouldn’t question the injury. If someone tells you they have cancer, you wouldn’t judge the bad days. People, for the most part, are supportive and understanding of those with a visible injury or illness.

What happens when your daily struggle and suffering can not be seen? What if that battle you fight everyday goes unnoticed?

I can only imagine the loneliness that someone feels if the constant daily struggle one goes through is not understood. I am a nurse, and have been for two decades, but I can’t write this and say at times I haven’t found myself on the bad end of those questions. I read an article on-line, To the family member who told me I didn’t need my cane, that reminded me that sensitivity is needed at all times.

As I read this story , I found myself questioning when I may have been insensitive to those that struggle with illnesses that may not be seen.

This story was written by a woman who actually suffers from five chronic diseases, one of which is myasthenia gravis (MG). This is a rare neuromuscular disease that is an inherited genetic defect. In it’s most basic definition, myasthenia gravis affects the muscles of the eyes, face and neck (including those that allow us to swallow), and legs.  ]In MG, the development of antibodies causes a blocking of receptors between nerves and the muscles they are trying to communicate with.

MG symptoms can come on suddenly and include difficulties with vision, swallowing, speaking and walking. The muscle being used becomes tired overtime and gives out. So, in essence, when rested, one can appear okay and then suddenly be overcome by this disease.

Believed to be autoimmune in origin, there are treatments to that may help, but flares can occur without warning. So the “You look okay to me” mind-set may present itself more than a person with this disease may want to hear.

To the family member who told me I didn’t need my cane describes a person’s struggle with myasthenia gravis and the insensitive statements by others that seem to belittle her daily battle with her illness. She uses a comparison to Rocky and his many battles in the boxing ring to describe her daily fight. It was this illustration that spoke to me. I applaud the fight made by all those battling chronic illness and I thank this woman for sharing this story to remind me of that.

If you want to learn more about myasthenia gravis, click here.


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