There were about 5 different blog posts I wanted to write this weekend, including product reviews of Red Apple Lipstick, Keeki Pure & Simple nail polishes, about meeting April P, and a couple of ideas still floating around out there that will make it into final form eventually. Then I read a comment on a support group I belong to that made me reconsider and realize that I needed to write this.
I’m going to paraphrase, but the basic comment was along the lines of, “I am tired of explaining my illness to everyone, they only laugh at me, and I don’t want to deal with normals anymore.” This broke my heart for so many reasons.
First of all, yes, Celiac disease sucks. It sucks that we have to make sure that if we dare go out to eat, we need to ask a thousand questions, double and triple check to make sure clean surfaces and utensils are used in the kitchen, that grills are cleaned, that we cannot order like we used to, that even our alcoholic lifestyle has changed. It. Sucks. There is no arguing that. But here is the thing. It isn’t going away. Not every. So unless you want to go back to the land of farting all the time, diarrhea, massive depression, or whatever not-fun symptoms you had when your system was crapping out on you and you didn’t know it, you are stuck with this diagnosis. But the positive to ALL of this is — we have the only autoimmune disorder where we can control it by food. We do not need to spend thousands of dollars on medication. We eat right, we are healthy. How cool is that?
As far as the people laughing and not understanding, well, maybe I am used to that because I was never one of the cool kids, no matter how hard I tried to be. Man, I wanted to be cool and popular so bad that I tried to subvert who I was. I obviously did not succeed at that, but I wanted to fit in so much it hurt. People will not understand or accept what they do not want to understand or accept. Period. If you want proof of that, just look through history. That does not mean they people on the mis-understood side stopped trying. They kept fighting their fight until they got their voices heard.
We are fighting our fight. For every 3 people who laugh or do not understand, there may be one in there that wants to learn more and get it, but is laughing to go along with the crowd. Maybe one of the people we tell our story to is experiencing something similar but is too embarrassed to talk about it. You just opened her eyes to something that maybe her doctor had not considered. For every “normal” (I really hate that word) person you talk to, you are spreading education and awareness. That is now someone who at some point later in their life can say, “Hey, I know someone dealing with that.”
And as far as work/whatever/life not getting it. Been there, done that. I’m the girl who Instagramed the picture of the apple, water, salt, and pepper packets that were all I could enjoy at a company sponsored luncheon. Ok, I didn’t eat the salt and pepper, but they were among the GF items I could eat. What I could not have were the sandwich and chips that were in the lunch. Was I frustrated? You bet your non-flaming hinny. Was I enraged? So much so that I emailed the event planners when I got back to the office and let them know that there was a portion of their workforce that was affected by this. At the office event we had on Thursday, there was a small GF pizza. It was a baby step, but it was a step. My co-workers now order a GF cupcake when they realized after 3 months I was excluded. On food days, there is always a co-worker that will bring in something for me to eat. Yes, it is usually the same co-worker, but another one stopped me from eating something I have made because of something that was added. It is not a perfect situation, but you will find people out there who care.
That being said, I recently was an extra in a movie and am so thankful that I brought a GoPicnic with me to set, because there was nothing at lunch I could eat. But that’s just the thing. I do not expect the world to cater to me. It is nice when there are options available, but for the most part, I try to keep something on me so I can eat with others. Yes, I have to explain why, but when they see I am serious about my health, they accept it. And I am always answering questions about Celiac when I do this.
Life on a daily basis can be frustrating. Trust me, I have been there. I have cried tears of frustration over being excluded due to my diet. I’ve worked for companies that have been great for visitors, lousy for employees. Heck, I still refuse to eat at my company’s cafeteria because the cross-contamination is so awful. The thing is, if I isolated myself from every non-GF person out there, I would not have the community of friends I have today.
And my friends/acquaintances/whatever you want to call them make my life better. The GF’ers who know what I am going through. AND the “normals” who share my love/geekery over theatre, music, comic books, Doctor Who, Game of Thrones, literature, and so many other things. If I never put myself out there, they never would have come into my life, making my life that less fantastic.
So, yes, we all struggle. As someone whose symptoms showed up as some pretty scary depression that has gone away post-diagnosis, I know how easy it is to dwell on the negative. But damnit! Life is too short to focus on all that is bad in your life and in the world! Snap out of it already! Have your pity party, then find 1 bright spot in your day and focus on that instead. It might be something as simple minor as something that made you crack a smile, or it could be a major accomplishment. The thing is, focus on the good instead of the bad. Your life will be that much better for it.
Or, you know, be Elle Woods: