My Celiac is not Your Celiac…but we ALL need support!

Meet Jennifer…she’s one of us!

If you haven’t yet heard of Jennifer Esposito, you should definitely look her up.  She is one of a very select few celebrities with Celiac Disease whom actually “GETS” Celiac Disease.  What I mean by that is that she understands that it is a real disease, a serious disease, and a disease that, for many, does not stop at eating gluten-free.  She has a great website and company and is working on an amazing campaign to advocate for Celiac awareness (and the deadline is extended, so GET YOUR VIDEOS IN!).

AND she was recently “let go” from her role on Blue Bloods, as a result of her illness.

You can read about it at Deadline, but basically, Jennifer’s doctor ordered her to work a reduced schedule due to Celiac Disease, and when CBS didn’t listen, she collapsed on set.  The network does not believe she is truly ill and says she’s unable to perform the demands of her role, thus, they are putting her character on a leave of absence.  They are not allowing her to work, but due to her contract, they are also not allowing her to work elsewhere.

This is absolute hogwash.

What is worse, are some of the comments regarding this topic.  From people WITH Celiac Disease, at that.

“No one needs a reduced schedule due to Celiac.  Trust me…I have it.  I haven’t missed a day of work in 3 years.  She just wants sympathy.”

Well, good for you.

I have had a terrible headache all day, and yet this STILL makes me want to bang my head against the wall.

Gluten Dude, Glam Without Gluten, and Celiac And The Beast have all written their views on the issue, but I wouldn’t be doing my part if I didn’t chime in, regardless of how EXHAUSTING it can be, as Celiac And The Beast so accurately noted.

Here’s the thing.  This is happening to a celebrity.  So we all hear about it, and we’re all up in arms, and we can all write, tweet, and call the network, and maybe even do something about it.  And the reason that we WILL do this, is because we can.

We will do it because we can because HOPEFULLY, MAYBE, JUST MAYBE it will make a difference to the next NON-celebrity Celiac who is let go because of his/her health.  I know Glam Without Gluten is no longer working because of workplace harassment surrounding her disease.  Who was there to go to bat for her?  I know this has happened to others, with no one there to support them.  How many of YOU face judging fingers and smirks of disbelief?

There simply is NOT enough RESEARCH about this disease and NOT enough AWARENESS.

I SIMPLY DO NOT UNDERSTAND how someone can think that just because they have the same disease that it presents the exact same for everyone.  The simple fact that some people who have the disease are COMPLETELY asymptomatic…that’s right, free and clear of symptoms…should go to show people that this is not a one size fits all disease!

My Celiac is not Your Celiac.

And it definitely ranges in severity.  Jennifer Esposito seems to have a severe case of Celiac.  I, too, am a poster child for the crap end of the stick of Celiac Disease.  People seem shocked that she collapsed.  I’m not.  I get tired so easily from doing the smallest things.  I can’t work right now.  If I did, I’m sure I would collapse, as well.  I have headaches, joint pain, memory issues, concentration problems, extreme fatigue.  I honestly can’t remember right now if I’ve fed my dogs.  No idea.  Not much harm done, I can just feed them again (they truly won’t mind), but you can see there are instances where this brain fog could do some damage.  Some days the simple pressure of one foot resting on top of the other is enough pain to keep me awake at night.  And NO, I do NOT eat GLUTEN!

Those of you who know me, know I avoid that stuff like the plague.  And I know Jennifer does, too.  I even am cutting out other foods to see if it makes a difference, but no miracles, yet.  But wait…we’re only supposed to stop eating gluten, so that doesn’t really matter.

So why?  Why do some people miraculously feel better, some have no symptoms at all, and some struggle daily with a myriad of symptoms?  Why do some people incur countless damage while others are barely touched?  Why did I require surgery at age 30, while some people who were only diagnosed in their 60s seem to be doing fine?

For starters…does it matter why?  Well, yes, I would like to know!  But honestly, think about it.  Are all cases of MS the same?  Are all cases of cancer the same?  I could go on.  Why do some people deteriorate rapidly?  Why do some people seem unaffected?

We are all different.  Celiac Disease is an autoimmune disease.  The immune system affects SO much of our daily functioning and well-being.  Many people with one autoimmune disease have or will end up with multiple autoimmune conditions.  Plus, as much as I have not wanted to accept it for myself, there may be nothing “else” wrong, but it seems that a lot of the damage that has already been done can be permanent.

The better question is: WHY don’t we BELIEVE people when they say they are not well?

The curse of invisible diseases…as I know Celiacs are not the only ones who deal with this.

Seriously, folks, WE’RE NOT MAKING THIS SH*T UP!

You think this is how I want my life to be?  That I asked for this?  You seriously think I’m being lazy, dramatic, just want attention?  You think this is what Jennifer wanted?

So, yes, I get tired a lot.  Too tired to post, often times.  But I can’t be too tired to stand up for those with Celiac Disease.  We need to be heard and we need to be understood.  We need to cause an uproar over CBS’s shameful behavior in hopes of making a difference for Jennifer, but also in hopes of raising awareness for all others with Celiac Disease who also aren’t doing so hot, despite a strict gluten-free diet.

If it wasn’t for this community, some days I would feel all alone in this.

Let’s do what we can to continue to raise awareness.

FIRST, get your videos in to Jennifer Esposito for her Celiac Awareness Campaign.  The details are here.

Then, here are a few options to show our support for our fellow Celiac, because NO ONE should have to put up with this kind of treatment (via Gluten Dude and Celiac And The Beast):

• If you are on Twitter, tweet your complaints to @BlueBloods_CBS
• If you are on Facebook, post your complaints at http://www.facebook.com/CBSBlueBloods.
• Tell them how you feel on the CBS website:http://www.cbs.com/info/user_services/fb_global_form.php
• Write CBS at 51 W. 52nd Street, New York, NY 10019-6188
• Heck, pick up the phone, call them at 212-975-4321 and give CBS a verbal thrashing.
• Stop watching the show and stop supporting the show’s advertisers. Hit ‘ em where it hurts.

SC