Do You Ever Feel Misunderstood With SMA? If So, How? | mySMAteam

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Do You Ever Feel Misunderstood With SMA? If So, How?
A mySMAteam Member asked a question đź’­
posted December 20, 2021
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A mySMAteam Member

I feel the exact same way

posted December 20, 2021
A mySMAteam Member

Yes. Sometimes I feel as though people think I'm not being considerate because I constantly have needs that I cannot fulfill myself. One time my mom even told me that I was selfish because I don't think about anyone else. That really hurts because I'm far from selfish and that's always in the back of my mind now.

posted December 21, 2021
A mySMAteam Member

No one, even family seem to understand that one day i can easily do some task and the next night, week, year...it is a struggle to move at all. I get called lazy on difficult days when i can't do something like help clear or set the table. If i can't move my arms because it was cold outside or i wore myself out doing another task, no one seems to understand. I am being lazy. It really irritates me as i tend to push myself beyond my physical limits to the point of nearly breaking.

posted December 20, 2021
A mySMAteam Member

I have been called lazy by a family member who compared me to my younger self. When I told her that I was trying a new therapy she said “I’m glad you are finally doing something to help yourself.” I have explained the way the disease works and she will never get it.
I guess she believes that I choose to be this way.

posted December 22, 2021
A mySMAteam Member

Yes to all of those feelings and interactions! It can be so frustrating when others don’t understand. I also try to remember there is no way for them to truly understand. I can do my best to explain but they will never have a true understanding….

posted December 21, 2021

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