November 28, 2011

Say What? Bottoms up?

As advocates, you're constantly in the health conversation: looking at what's being said and trying to help people navigate new diagnoses, treatments, symptoms, and stigma. You work hard to put great, honest info out there wrapped in narrative - truly putting a face to what patients go through every day and really making a difference.

 So it must be totally frustrating when you come across something false, incorrect, stigmatizing, or just plain outrageous. Let's use that today. What is the most ridiculous thing you've heard about health or your condition? Was there any context? What did you think at the time you heard it - and what do you think of it now?
 How do you address these myths and some of the other absurd internet info on your condition?

A few days after I got my diagnosis, I had broken the news to family and was now debating if I should tell any one else.  It wasn't something that I spent days thinking about.  As a matter of fact, I wrote out and email and sent it to my closest friends.  And then started this blog.  I am not one to hold things in and hide them away.  Seeing that there was no one else sharing their life with Budd Chiari Syndrome only proved to me that it was the right thing to do.  After all, people needed to know what life was like with this disease and that it would be OK   So I opened myself and my life up.  Updates, photos, stories.  I was not at all prepared for what came next.

When I added the "Ask me anything button"  people asked, and their questions broke my heart.  Although I have a feeling the people asking are people I know who just had nothing better to do with their lives.  And that is even more sad.  One person asked "Do you expect your husband to stay with you now that your sick"  Another was "How to you expect to be a good mom when you cant even take care of yourself"  But the one comment that hurt the most was "The apple doesn't fall far from the bottle, does it?"

Really people?  Come one!  Do people really think that everyone with liver disease is an alcoholic.  Yes my family is known for drinking and yes, I myself have had drank myself stupid, but what happened to me has nothing to do with drinking.  Alcohol actually thins your blood and I have a blood clot in my liver.  So maybe I should have drank more?  I take that back.  I would rather have this failing liver than to have to struggle with that addiction any day.  

And it didn't stop there.  I have actually had friends say "Damn, guess we drank to much back then"  and "I didn't know you still drank like a fish"  People that matter to me.  I know they meant it in a joking way, but it still felt like a knife to my heart.  I did not do this to myself.  I could not have stopped it.  It is what it is, whats done is done and I am just trying to live the life that was laid down before me.  

And what makes me sad is I have heard time and time again from my liver buddies that people have thought the same of them.  They are in the ER and even nurses comment on them being to young to have drank themselves in to liver failure.  There are so many other causes.  As a matter of fact, the leading cause of liver failure is TYLENOL! In fact Johnson and Johnson lowered their max dose on Extra strength Tylenol from 8 pills to 6.  This should have taken place this fall, but I haven't checked yet.  You can read the complete story HERE! There are liver cancers, Chronic and Autoimmune Hepatitis, Primary Biliary Cirrhosis, Primary sclerosing cholangitis (PSC), Wilsons Disease, Fatty liver which yes is more commonly caused by alcohol abuse, but not always.  I could go on and on.  

The truth is, before I ended up with liver disease and I used to think the same.  People who had bad livers and needed transplants must have had drank way to much.  I have no problem setting the record straight.  Now I know better and I hope you do too!


This post was written as part of NHBPM - 30 health posts 30 days:  http://bit.ly/vU0g9J

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