The Worst of the Struggles

Then Everything Changed

I’m not doing well.  Really, that’s a huge understatement.  I don’t have any clever sentences or pieces of humor to lighten this terrible disease we struggle with day in and day out.  Still outside of personal struggles with our symptoms, pain, fatigue, depression, limitations, grief, loss and so much more the hardest thing to deal with is other people.  We have to fight with our doctors and insurance companies for help, with our friends and family for understanding and empathy and the world at large for a little bit of room to move not like a “normal” person.  Even worse is when our illness is used against us, when we are treated like criminals, drug seekers, malingerers, liars, and so much else.

The disability hearing was emotionally painful beyond words.  It was the sum of all those years of everyone from doctors to employers to strangers to friends accusing me to…

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