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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.

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

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

A mySMAteam Member said:

I feel the exact same way

posted about 1 month ago
A mySMAteam Member said:

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 about 1 month ago
A mySMAteam Member said:

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 about 1 month ago
A mySMAteam Member said:

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 about 1 month ago
A mySMAteam Member said:

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 about 1 month ago
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