Reply To: Accepted? Or Tolerated?

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Daniel Gu
Participant
Barry, welcome to the community! Thanks for speaking up.
When you say your family members think they misunderstand you thinking you pretend to be disabled, can you elaborate more?
Your comments resonate with me dearly. I myself have been experiencing something similar. I walk everyday a few miles around our community. As my walking gets better, many of my neighbors believe I am almost fully recovered. They could not understand why I do not go back to my old job.
I myself know why. 
Yes. I have been very hard to walk normal. But I know it is not. The 3 miles which would take me less than 1 hour prestroke now takes 2 hours when I try my best. My neighbors will not see how I struggle in typing and reading. I could not wear the dress shoes any more or I could not keep balance. The once energetic and tireless tech executive they know could no longer do his old job. 
This is not something one could possibly overcome by “staying positive”. When my girl’s college tuition bill is due, can I mail the university registrar a proof of my positive attitude, and get a waiver? Of course not. It has to be paid with my wife’s over time. By the way, before stroke, she was a housewife involved heavily with our community. Our neighbors still love her.

Sleeping disorder, headache and numbness in the limbs will not go away with a positive determination. And some times, when a sharp neural pain wakes me up in the night, I have to wonder if this is an ominous warning sign to send myself to ER again. If I should also wake up my wife who is sound asleep after a day of very hard work.
The loss is real. And often we hold it to ourselves to protect our friends and family. But now I start to wonder, without letting them know what we are going through, are we truly helping them grow. Are we truly bring stoke awareness to those who love us dearly?