Wednesday, November 30, 2011

A Ponder about this Disease ...

Seriously ...  Sometimes I think that those who have Celiac Disease or some sort of Gluten Intolerance or Sensitivity are their own worse advocators ... if the people who actually have the disease or intolerance can not get it right, and don't understand the seriousness of their own actions, and those who have Celiac their own disease ... what hope do we have with everyone else being able to understand? It's a bit alarming.

I caught a show a couple nights ago called "Two Broke Girls" - which had a negative joke/comment made about Gluten Free - which set me off on a deluge of reading - one to first read what others thought of the comment made on the show.  The version - one of the girls comes up to the other and says "There is a woman needing to eat gluten free in my section - what do I do?"  the other flippantly replies "Tell her she is not allergic to gluten ... she is masking an eating disorder".  Now I am aware that I was watching a sitcom and they are notorious for making light of serious issues, making jokes about race, color and cultures ~ but I was still a bit shocked and taken a back.  And surprisingly quite angry ... because even though it is just a sitcom ... It breeds laughter and contempt for a serious matter, and makes light of a subject that in this time period is a wash with controversy, misinformation and one that has become a real struggle for anyone who is living with celiac disease, gluten intolerance or sensitivity to be taken seriously.  It just frankly pissed me off because I have a hard time just helping family and friends to understand a smidgen of what I go through on a daily basis without another misinformed show or person "tumbling my cards" - so to speak.  That's my vent ...

And then I went in and started to read the forums and comments that people were making about this show, and that lead me to forums and blogs about people who were commenting on others misrepresentation or misinformation about Celiac Disease and Gluten Intolerance ... and I just felt well mildly alarmed and a bit disheartened, because like I started - if those who have Celiac Disease do not understand it and misrepresent it ~ what hope do we have for others?  It has left me thinking - how can we get proper information out about what Celiac Disease is?  How do we educate the world?  Especially ourselves?  How do we properly inform family, friends, others with the disease or intolerance of what it means to be gluten free?  How do we not closet ourselves up in our homes - be
afraid to go out with the fear that we will run into prejudice, ignorance, rudeness?  How do we grab life and live it to the fullest without constantly battling with "the world" (I know maybe an over exaggeration) about our health and safety? 

And then I took a big breath ... I guess it has to start with each one of us individually. 

I also read of everyone's struggle ~ Celiac Disease is not a simple disease ~ there is a host of symptoms that people may or may not have, sensitivity can range from mild to severe and everything inbetween and this has caused a huge gap in the learning curve out there - medical, personal, commercial ~ debates, talks, shows, article after article you can listen, watch, research ... it is mind boggling and often overwhelming.  

Again I breath ... I think one of the number one aspects we all need to learn - (that would be us living with the Disease or Intolerance, those who have family members or friends doing so ... and even the general public who are often irritated that this has become a highly talked about issue - but then again folks look at those numbers - 1 in 133 - pretty high odds and makes for a lot, a lot, a lot  of people) is that it is a huge learning curve for everyone ~ so much is known, so much is not yet known, so much is out there yet to be learned ... need to read and give each other the praise of making efforts where we see them, and try to help those that don't ~ and at the same time figure out our own path.  

I know myself - that when first diagnosed about three and a half years ago - well then I didn't know what Celiac Disease was, what an auto immune disease was, what even gluten was ~ I am learning.  I know that after diagnosed and going on a gluten free way of eating - I felt like I had been given a new lease on life ... but now I am struggling to find a balance, to figure out what other intolerance I have and to what ... words and issues I never knew come to the for front to research and learn about - lactose intolerance, leaky gut, probiotics, intestinal flora and on and on ... so I need to take a breath - give myself a break and yes ... give the same to others ... 

It starts with ourselves ... and then we can learn ... and we can pay forward ... and others will too.
One day at a time ... 

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