myasthenia

Hi everyone, I don’t usually post. I just read because my experience is that I scare people off due to my multiple and challenging diagnoses. It’s like they don’t know how to talk to me like any regular person or maybe they think they might catch one of my non—communicable conditions or something. See a very short list in my hashtags. People I do speak with feel that all I talk about is medical stuff but when you ask how I am, how can I NOT bring it up? This is my life and my world is surrounded by medical considerations. And yes, I do other things that are life affirming and creative to stay afloat but the conversation never goes there. It’s like they only see and talk about medical and then blame me for it and excuse themselves from my life. So, I don’t know how to get my feelings out. There is a lot of grief left from the functioning life left behind. I need community but I really don’t even know where to start.

#Disability #myasthenia Gravis#Dysautonomia #Deafness #sjogren ’s Syndrome#mast cell activation disorder#CPTSD

I almost died fighting 7 years just to receive my SSI benefits. now that I'm a survivor, SSA doesn't give me much to survive off of. I'm forced into a life of poverty which isn't fair. Yet, the government continues to give more funding to other groups of people, whom are not chronically ill. Please visit my website upliftthedisabled.org, to learn more about my story. #HealthCare #Disabled #myasthenia Gravis #social security #Poverty