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Real members of mySMAteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Have You Experienced Social Stigma Because Of SMA? How Have You Handled These Situations?

Have You Experienced Social Stigma Because Of SMA? How Have You Handled These Situations?

A mySMAteam Member said:

Father,
Please forgive them, for they know not what they do.
Amen

posted 26 days ago
A mySMAteam Member said:

Just be your self and do something you love to do

posted 25 days ago
A mySMAteam Member said:

At one point there was an issue at a new school we went to but we left and went back to old school the kids were just rude and the principle didn't seem to care. But on the normal everything is good everybody knows her and loves her I'm just her mom😊

posted 26 days ago
A mySMAteam Member said:

I never experienced much social stigma in school growing up...perhaps because i walled myself off from it staying blissfully unaware. Awareness really did not begin to seep in until college, but college too is such an unreal world, i could largely ignore it. It was after college in my first job it hit me like a ton of bricks...ironically in a job in the governor's office to help people with disabilities become employed. I soon realized that the system is designed to stigmatize the disabled...a machine designed to make us be quiet and disappear isolated from everyone in the false pretence of help that comes at a high price.

posted 21 days ago
A mySMAteam Member said:

I’m not sure if I’m experiencing social stigma due to SMA specifically or just to being disabled and in a motorized wheelchair. My younger brother and I both have SMA-2 and use motorized wheelchairs. People can’t get enough of staring at us whenever we’re out together and with our family and friends. I’m used to being stared at when I’m on my own. But with my brother, it’s like we’re a circus freak act or something. I try to ignore it but I can’t help but feel hurt. His girlfriend gets mad at people and sometimes tells them off. I just hold in my pain and anger. I’ve become very anxious about going outside and being among people now. I’m like a hermit now. I just feel ashamed and embarrassed of myself and I feel bad for people who are with me. I feel like I’m embarrassing them with my presence. I know it’s not true but my self esteem is very damaged now and I’m not sure what to do to feel “normal.” 🥺

posted 26 days ago
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