Living with Celiac Disease is no walk in the park. One of the speakers at the Iowa Celiac Conference that took place on Sept. 29th in Marion, Iowa spoke about the emotions of living with Celiac Disease, or any chronic illness, for that matter. You can read more about the conference from last week's blog post I wrote here. The biggest thing that stood out to me about this portion of the conference was the truth that people understand things based on their own experiences, not necessarily the way things really are. People who have never lived with chronic illness can't possibly understand what those of us who do go through. It is beyond their scope of experience. So, those of us living with chronic illness end up feeling hurt or frustrated at well-meaning family and friends who just don't understand. It's not their fault. They are trying - based on their own life experiences. That is all we can ask of them. Having said all of that, I believe that communication helps facilitate understanding between people. So, in the hopes of fostering some understanding I have put together a list of what I wish people who don't live with Celiac Disease could know about those of us who live with this every day.
I can't just go out to eat with friends or family at the drop of a hat. I need a bit of notice, especially if plans are to eat at a restaurant that I haven't been to since my diagnosis. Living with Celiac Disease makes spontaneity extremely difficult. Fast food restaurants are completely out of the question and you have no idea the panicky feeling I go through before any kind of social event that includes a meal such as a work banquet, wedding reception, etc.
Just because a restaurant offers a gluten free menu or gluten free menu items does not necessarily mean that the food is actually safe for me to consume. I have to ask my server questions in order to determine if the gluten free food is prepared on shared equipment, oven, grill, fryers with gluten-filled foods, if shared utensils are used as well as what steps are taken, if any, to prevent cross-contact with gluten. This is why I require a bit of notice so I can do as much research ahead of time as possible in order to keep myself safe. Even if the food is gluten free, if it is prepared using shared equipment and utensils, it is not safe for me to eat.
If I have to cancel plans at the last minute (and trust me, more times than I would like, this has and will happen) it is not because I don't want to go, am being anti-social or am in some way upset with you or don't like you. Nothing could be farther from the truth! If I have to cancel it is "just" because I'm having a flare up and can't leave the house. This disease can be very isolating at times.
It is not just ingesting gluten that can cause a flare up of my symptoms. Flare ups can happen if I'm under a lot of stress, not getting enough rest or have been around anyone who has any kind of illness, even as simple as the common cold. My immune system sucks! My body has been attacking itself for decades and sometimes, no matter how careful I am or how well I take care of myself, flare ups happen.
Something as small as a teeny, tiny crumb containing gluten can put me in bed for up to a week with nearly unbearable symptoms that range from raging diarrhea, vomiting, inflamed and achy muscles and joints, a severely bloated abdomen that feels like my insides are on fire and going to explode, migraines and so much more.
Believe it or not, I HATE the fact that I can NEVER take a break from thinking about Celiac Disease. Not for a single minute! If I let my guard down I can get "glutened" and end up being terribly sick. And, in my case, my worst symptom is anaphylaxis, meaning my face swells up and my throat closes off (think of what you know about people with a peanut allergy). That is so not worth letting my guard down for even a moment. It's exhausting!!
I know and absolutely hate that my disease causes others to be inconvenienced. Having to put my needs first is difficult for me because it goes against everything in my nature. When other people are put out because of the constraints of my disease it hurts me because I don't want to be the cause of others being inconvenienced.
All gluten free food doesn't taste like cardboard. In fact, there is a lot of great tasting gluten free food! The best gluten free foods (healthiest and best tasting) are those that use minimally processed or un-processed naturally gluten free foods and ingredients.
It's not a fad or a weight loss diet. Being gluten free is my medicine!
I've learned that I'm stronger than I ever knew.
#celiacawareness #glutenfree #glutenfree4life #itsnotafadforme #glutenfreebecauseIhave2b #siouxlandceliac
No comments:
Post a Comment