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Reply to "Strange Illness."

@skn69 posted:

Chook,

I like to say that we have the most un-sexy disease out there...we feel somewhat cheated in the disease marathon...

They have runs and races and all sorts of telethons and events for other diseases...you can talk about those.

Heart attacks and heart disease get you sympathy and concerned nods or empathy. They are shown in movies as dramatic events with a hand-to-the-chest and a swoon...you can talk about your heart attack in public or at a cocktail party...people listen.

Kidney disease, organ transplants mobilize whole teams of medical professionals and people have been known to brag about how they got their hearts or kidneys.

Breast cancer? Pink Ribbons and pink t-shirts and runs...the disease may be horrific but their press agent did marvels.

But us? Talk for one second about bags and bloody bowels and the room empties of people or they start making 'pooing in your pants' jokes.

No one wants to talk about bowel disease, no one wants to hear you complain about bags and diarrhea...we live in fear of people learning about us and our 'problem' have to hide it from everyone and get no sympathy...we get told that if only we had stopped eating this or started eating that then we would not be sick.

Everyone has advice or knows better than we do or even the doctors...I had sister-in-laws giving me advice on my colon and what not to eat (I haven't had a colon since 1979)...I have been fired because my manager basically accused me of flushing my 'bags' down the toilet and blocking up the plumbing...I do not have a bag but a pouch! They did not care about the truth and I was too mortified to fight it.

Our disease, whether it be IBD,/IBS, UC, Colon Cancer or Crohns is a depressing disease...we can't talk about it, we can't get sympathy and we are often the butt of other people's sick jokes...we live hidden and in fear of accidents...it is not surprising that so many of us end up depressed...

But you have a whole family here...all understanding and willing to help...you are not alone...

Sharon

* I am not denigrating anyone else's disease when I write this...and I am not belittling those who have suffered from other diseases...I am just stating (in a somewhat cynical way) a fact...that we are high on the list of 'unloved' diseases...

I apologise in advance if I have offended anyone.

Sharon

I 100% agree!!!!!! You explained everything perfectly! Same thing for people with FAP too. I think the reasons you wrote are the number one reasons we need to stick together

Thank-you for writing this

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