In case you ever need to know, the sure-fire way to seriously piss me off is to tell me that I am suffering from Moebius syndrome.

The people of Nepal are suffering. People and families who are going hungry or experiencing great trauma are suffering.

I am living, not suffering.

Yeah, it sounds like I’m just being really picky… but for me, and for many others living with chronic conditions of all kinds, that distinction defines so much. It defines how you approach me, how you approach the fact that I happen to have a rare medical condition.

If (the general) you approach my having Moebius syndrome as suffering, I immediately feel on guard. On guard for what, I’m not sure – pity? condescenting-ness? mid-understandings?

Perhaps I need to work on seeing the other side of things and think in terms of educational opportunities and different life experiences and such… but I don’t always have the energy for that.

I’m too busy living with Moebius syndrome. 


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