Shedding Expectations While Living with Myasthenia Gravis

In the years since my diagnosis of a rare, incurable disease, I have learned about unspoken rules that have been thrust upon me and the social expectations that quickly follow. 

Whether intentionally or not, there is a subtle, yet real, desire by others to see my health journey end with an inspiring victory — one that beats all odds. Or some may want a story that is light and happy, regardless of what my reality may be. A weariness quickly sets in among friends and family when they realize that my reality defies expectations. That prompts myriad complex emotions, particularly loss. 

Part of my heart understands that this is a cumbersome load with no horizon in sight, and that can frighten many away. Others don’t take the time to really learn what lies beyond the facade of social media, and they can’t support what they don’t understand. Maybe they are overwhelmed in their own lives, scared about what I now live with, or influenced by the media’s portrayal of what chronic illness should look like. The reasons don’t matter to my heart, though, no matter how valid. It means that, ultimately, they are justified, and I am left to fall into the shadow of their void. 

I have found myself asking why? Why is there a social and deeply complex standard that defies the truth of what chronic illness is? Why is there pressure to conform and reshape the square that is my myasthenia gravis into the round hole of others’ needs? 

I am not obligated to be an inspiration in my suffering. 

I am not obligated to cloak my darkness and struggle in a shroud of happy light so that others may feel more comfortable or less burdened by my heavy weight. 

I am not obligated to do anything wondrous in my experiences. 

I am not obligated to think of my often hidden heartaches as happiness in disguise. 

I am not obligated to dismiss where I am by remembering that someone, somewhere, has it worse than I do. 

I am not obligated to hide away the ugliness that walks hand in hand with the beauty of suffering and chronic illness.

I am not obligated to be content with passivity and dismissal hidden in clichéd messages that ring hollow and empty. 

Weep with me and then help me laugh again. 

Fight for me when all my strength is gone. 

Whisper encouragement to me when I am down, and pick me up when I have fallen. 

Walk with me in the darkness and run with me in the light.  

Don’t ask me to temper the truth of what I endure. Help me bear the load instead.

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