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Ataxia Support Network

People that don't accept your ataxia


#41

rose, I read your comment about not telling people if it is found to be recessively genetic - I just (about a month ago) found out my Ataxia is a result of Hereditary Spastic Paraplegia (another thing that people have never heard of!) that is genetically transmitted through recessive inheritance - so, jokingly, I now tell people that know us that my Ataxia is all my parent's fault! They have a slightly twisted sense of humour (like I do) and can see that it is meant as humourous, not malicious. They feel bad about passing this down to me, but they don't let that override their life - when they tell me that, I just remind them that it was totally out of their control since they didn't know anything about it. And until they had genetic testing of their own, they weren't 100% sure that they are where it came from.

I think in the long run some people can be unknowingly hurtful with what they say or how they act - I just try to ignore those people when I can. I'm fortunate in that those around me don't treat me differently - other than helping when I ask for it.


#42

Some people have no feelings when others are experiencing problems they are not sadly.


#43

Maybe some people either look too young, or are too young, or seem too well, for anyone to believe that they are sick. I tell strangers that my leg was broken or that my back is out or that I had too many drinks. I find that being truthful only causes more tension. No one has heard of ataxia, it seems. MS, cancer, heart attacks, Parkison's, ALS, strokes.... these are "big" illnesses that people know. N


#44

Ataxia is a pretty much complicated story to tell people and it’s oh so tiring to tell again and again. So just ask them to GOOGLE cerebellar ataxia FIRST and that you will THEN have the conversation. You will find that you won’t have to explain anything anymore after they do their homework. IF they do it that is, because some don’t even bother. Mind, these ones don’t tell you, but you will notice:) Just flip the coin and wait!


#45

Well, you r right but I find that people are loathe to Google anything. Also, it doesnt always feel right like with cab drivers, clerks, bus drivers and salespeople etc.