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Reply to "Short rant"

Thank you all for your kind words...funny how the greatest kindness comes from 'others', those that we do not know (physically).

I think that this disease, (or any long term disease with consequences), has a devastating effect on families. Jealousy, misunderstanding, incomprehension etc are often part of the problem.

I know that in my family's case it was all of the above.

As a child who was born sick and lived my life between hospital visits and surgeries, I got used to all of the physical pain and suffering (but never the humiliation of it all). I was an outsider from very young who depended on my family for support.

There was often no one else because I did not have the time to meet others outside of the hospital.

That put a heavy burden on my family. 

As a lot of you have said, the nature of our disease makes it something that we tend to hide (especially in the 60's - 90's). No one talked about it. You had to stay home. You didn't discuss colostomy bags and leaks and accidents with others...my horrible brother threw out at me last year that we do not discuss family business with outsiders...that was something that my dad said a lot regarding my health...don't tell. Don't let them know. It changes how people will look at you, their opinion of you etc...

So...once again, I am left alone in my solitude...

As a Tennessee Williams wrote in a Streetcar named Desire, 'I depend on the kindness of stranger'.

Sharon

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