I just read a blog post on the Gluten Dude's website titled "You Don't Look Sick" followed by a symbolic expletive. I've often used the actual expletive when I read about this topic. Here's an open letter to everyone who knows someone with celiac disease who just doesn't get it:
I'm sorry I don't look sick to you. I've had a lifetime of hiding the symptoms, and - let's be honest - you're not looking that hard. If you were, you would have seen the signs. For instance:
Did you see me sneaking away to the bathroom three billion times per day? That's what happened when I ingested gluten in any form.
Did you notice my ribs showing, because I couldn't keep weight on? How could I? I was pooping it out as soon as I ate, and none of the nutrition could be kept in my body because according to my colonoscopy report, all my villi were damaged or destroyed.
Did you notice that I weighed only 84 pounds when I was 27 years old and only 5 feet tall? They call that failure to thrive.
Did you notice that I couldn't think straight and was often confused or forgetful? It wasn't that I wasn't listening, it was the brain fog, one of the neurological symptoms of celiac disease.
Did you notice that I wore my pants loose because I was so bloated that I looked like I swallowed a beach ball?
Did you see me doubled over in pain with stomach cramps because I'd eaten something in a restaurant or at a friend's house that I was told was gluten free, but wasn't?
When I missed family functions because I was too damn tired, did you ever wonder why? Or did you just get pissed and think I was being a drama queen?
Did you ever wonder why I always felt so down? Do you think I enjoyed missing out on spending time with family and friends?
Did you think I should have gone out to a restaurant or a friend's house for dinner and a beer when I didn't know if they had anything I could eat or drink? Why would I want to feel like a burden?
Welcome to my world. Thank God that I finally found a doctor who took the time to find out what was wrong. Thank God I was stubborn enough to fight for my health when the "new normal" was always feeling shitty - literally. Thank God that the treatment for celiac disease is a gluten-free diet, rather than pills that have the potential to create so many other health problems.
So before you go all Judgy McJudgy pants on me and tell me that I didn't look sick, ask yourself if you were really looking and listening, or if you just thought that if you couldn't see anything obvious, I must be faking or a whiner. I was just doing the best I could to live my life as normally as possible with a chronic, systemic illness.
I'm not asking for your sympathy. I'm just asking you for your understanding and for you to keep an open mind when confronted with something that you can't "see."