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:
Wow! It is June and 2013 is now officially at the 1/2 way point. Plus we just wrapped up Celiac Awareness Month on May 31st.
What a month.
It is only logical (GAH! Star Trek) to start with the bad. By bad I mean, Holy Shizzballs Major Media Outlets, Do You Have Your Head Up Your **edited**! I mean really. How hard can it be to have an intern do 5 minutes of simple internet research to get facts? Apparently it is almost impossible for that to happen. GlutenDude continued his fantastic, award-winning run of sarcastically dealing with the media stupidity out there and sounding the horn for the rest of us to learn where to direct our ire. The first idiot spewing off on GF was Rush Limbaugh. What made me laugh is that the GF community apparently is as fed up with his BS that none of us decided it was worth talking about. Maybe because he flip-flopped his opinion so much that you ended up not totally sure what the heck he was ranting on. And we didn’t want to give him the press he so obviously longs for.
Mid-month we had the Disney Channel brouhaha. A show they air, JESSIE, had an episode where they a) went on about a character having 5 pages of allergies, and then b) had one of the “hero” characters throw pancakes at the allergy boy because he was “annoying. Way to go Disney. Let’s show that bullying and picking on someone just because they are irritating you is the way to handle the situation. This disappointed me most of all because the theme parks are so allergen friendly. If you aren’t familiar with the episode, the GlutenDude response, and what we as a community accomplished, well…the hyperlinks are there for ya.
Of course, the media crap didn’t end there. Nope. Chelsea Handler, who I understand is allergic to Gluten. Seriously, this was awful and ignorant of the people who have to follow the Gluten Free diet because if they don’t they could DIE! And then lastly, because we have not endured enough of a media shizz storm, we got a mention on the Today Show 4th hour by Hoda Kotbi. Well…..yeah. *sigh* MAKE IT STOP!!! Granted, we got a kind of apology, you know, the kind a 4-year-old gives when their mom tells them to apologize for something and they don’t really want to. All this shows me is that we, as a Gluten Intolerant/Celiac community, need to get out there and start educating how important, and life saving, the gluten-free lifestyle (cuz it is not a diet) is for us.
So, if I am calling for action, what did I do?
Well, I wore a Crave Bakeshop t-shirt to a Doctor Who conference.
I wore green. A lot. Considering it is my favorite color, that was not too much of a stretch. Heck, I own 5(!) different shades of green nail polish. So I rock the Celiac Awareness color year round.
There was a bit of a heated e-mail conversation with the owner of a restaurant that handed me her card at the Chicago GFAF expo and invited me to try her Gluten Free Breakfast. Except that it is cooked on the same surface as the Glutenous ingredients and with just a little bit of a clean-up. Granted, I ate when i was there, knowing the risks, but I don’t know if the upset stomach I had after was from being upset or from being glutened. Needless to say, she still seems to think that having GF ingredients makes her GF, I cannot convince her otherwise, and I learned what it was like to, hypothetically, bang your head into a brick wall.
There was the Dining Out with Bruce event at DaLuciano’s this month. To say that I ate a lot of food would be an insult to a lot of food. I think there was about a TON of food to be had. Just when we thought we were done, MORE came out!! This event was such a unifier for the Chicago GF community as it brought so many different people together at an event where you had to talk to your neighbor and learn a bit more. Plus the food was AMAZING!
I did my best to try to educate my company about Gluten Free, and why it is important to have options available when there is a company wide event. Apples, salt and pepper do not make a full, or happy, employee.
Finally hit up the Grand Rapids Gluten Free Food Fair. Talk about being impressed! Well, mostly. One of my favorite companies had a rather dismal “booth”. Other than that, so many local restaurants came out with knowledge about cross contamination and provide safe food samples it was inspiring. Plus I got to meet Willy O, who makes an award-winning GF Pizza! if you live in West Michigan, make sure you Google this FREE event next year. It is worth attending.
The game of phone tag with the company that operates the food service locations at the United Center ended. I finally discovered why they only have their GF booth open during sporting events, and gave them a suggestion or two to make life a bit easier for the GF attendee at other events.
I supported smaller Gluten Free companies. I now own so much Celiac and the Beast wear, it is kind of scary. But I know if she has a v-neck, I am scooping that up! Plus there was the end of the month purchase for some more eyeshadow from Red Apple Lipstick. I’ve purchased from them at the Chicago Expo the last 2 years, but had never done anything online. Until I read this story on their blog. How could I not chip in and help out? We are a COMMUNITY after all.
Except for that minor Twitter disagreement I had with someone who wants people to eat GF his way, aka only the savory not so much the sweet. I agree that there are a lot of sweet GF recipes out there, but am of the opinion it is because replicating the taste and texture of the sweet is harder to do than to replicate flavors of the savory. We did agree that the GF community needs to be health conscious, but doesn’t everyone? Communities do not always see eye-to-eye, it is about how we work together to get over our differences that is important.
And on the very last day of the month, I became the first actor featured on GlutenLibre.com’s GF Performers site. Pretty kick-ass.
I probably did more, but really, all I did this month was live my life. It may, or may not have, helped raise awareness of Celiac Disease. But if I can educate and make a dent in my corner, then I would say it was a pretty good month.