“My Myositis”

Ever feel like you don’t have a voice? That there are a million things you’d like to say if only someone would listen? Living with a disease that 99.99% of the population hasn’t heard of can definitely make you feel invisible. It is frustrating when doctors talk to us in numbers and dosages — what is your CPK? how many milligrams of prednisone? — and forget that we are real people living real lives with a real need to be heard.

We want to help you be heard.

We are starting a series entitled “My Myositis” where anyone who has experienced myositis in their life can have a guest post on our blog. If you would like to share your story on our page, just email us (myositisco@gmail.com) with what you would like to say (please limit your post to around 600 words or less) and include a picture of you for us to post (.jpg format works best).

What have you wanted to tell the world about living with myositis? How has the disease changed your life? What would you tell someone newly diagnosed? What would you tell your past or future self about living with a chronic disease? What are your hopes? What are your fears? What are the things you want to scream? What are the things you haven’t said out loud?

We are listening.


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