The diagnosis of celiac disease or other food allergies comes with another hidden cost that isn’t always thought about or understood right away. You end up missing out on more than just the gluten in today’s societal standards.
Here is my big post in honor of Celiac Disease Awareness Month, this May. I’ve said it before, that I’m grateful for what this disease has brought to my life (more than what it has eliminated) and I don’t find it difficult to live with. That’s one of the reasons why I knew I had to start Strength and Sunshine; to show all my fellow celiacs (as well as other food allergy brethren) that our restrictions and medical conditions do not need to dictate the ease, happiness, and joy we have in life. Food can STILL be fun, delicious, and freeing!
There’s always a few caveats (like the “trend” status) and although I’ve learned to expect what I’m about to discuss, it still creates a nagging disappointment and feeling of mistreatment and disrespect.
I felt it on two recent instances and it really had me thinking. The first was at the conference I was asked to speak at and present my celiac disease research project, ironically. During the awards ceremony, there was a catered lunch provided from the dining hall on the campus the conference was held at my university. I knew to plan ahead (as I always do in these situations) and pack my own food, of course (since I’m more than just gluten-free this is even more essential). My mom also needs gluten-free food, but no matter how many times I tell her and how many times she runs into this problem, she never brings any of her own. She came down for the conference and was my “guest” during this lunch and award ceremony. Right when we walk in, at the back of the conference room, all you could see was a massive table spread of sandwiches, pasta, and cookies. Nothing else, just a total gluten-fest. Nary a gluten-free item in sight. The irony was too much and my mom and I had to laugh. After just giving a huge presentation on the non-medical struggles of celiac disease, here was a real life example of exactly one of the points I discussed in my research. The societal isolation and negligence that heaps on feelings of exclusion, stress, and anger for a celiac.
This is why so many of us feel like we can’t just “go out to eat” or end up turning down invitation to social events, as in this society, all social events usually revolve around food. It’s easier to just “no go” and pass up the opportunity so we don’t have to explain ourselves and disease, bring our own food, be singled out, or scoffed at and told we can just “eat the icing” off the cupcakes.
Then, a few weeks, later, I decided to reach out to a new Meetup.com group for small business owners in my area. I had always been hesitant to ever join this one for a meeting because there was a $15 cost per meet-up and it was always held at IHOP. This was under the assumption that you would be eating and the cost was associated with some group discount the organizer was able to get. I finally got up the courage to email the organizer and ask if I had to pay if I wouldn’t be eating due to celiac and food allergies.
She told me, “Yes, you would need to pay the $15 each meet-up. Can you eat a salad? Maybe you can order something to go, and take it home to a relative. Just don’t want you going home empty handed.”
WHAT!?
I don’t know why I had such a “jaw-drop” moment when I opened that email response, but I was shocked. Why should I pay if I medically can’t (and won’t) eat there. Telling me to order a salad is like telling me to lick the outside package of a loaf of whole wheat bread (not safe!). And sorry, but I’m a single college girl. No one to waste money on and order a random meal to give them (who would want cold old pancakes anyway?) Regardless, this should not be an issue.
Both these incidents left me feeling annoyed and exasperated about the blatant disrespect and disregard there is for people with real food allergies. It’s one thing if you feel singled out for a diet OF CHOICE, that’s your own problem to plan for. But when it is not a choice (and you do plan and try to find solutions in the easiest way) but still come away with feeling of neglect and antipathy. You become a shadow that’s forgotten about and completely brushed under the rug (in the case of the conference) or you feel like your illness is a joke, a simple “paper cut on a finger” and you should “play along” with everyone else.
In today’s society and with the stigmas and standards we have created around diets and food, those who have medically diagnosed food restrictions and allergies feel embarrassed, burdensome, and like their diet and “identity”, is dismissed as just another self-imposed trend. But it’s not. Food shouldn’t deter you or make you feel ashamed to participate in something. If you don’t (can’t) eat, you shouldn’t be obligated to do so. Food and eating should not be “expected” just because it’s been made into such an integral part to most social events. No one should feel awkward, burdensome, rude, embarrassed, an inconvenience, “difficult”, just because they could die, starve, become seriously ill from the food (lack-there-of) or cross-contamination at a social event. However you want to describe it, that’s how we celiacs (and food allergy folk) feel. We end up missing out on “more than just the gluten”. It’s easier to forgo the experience and avoid the awkward social struggle.
In the case of the conference, there was total neglect of any food allergies (even with prior information, invites, etc.). In the case of the meet-up group, it’s not that I couldn’t have gone (or still go), but it’s the disrespect I feel, the assumptions and expectations. The lack of how serious celiac disease and food allergies are is still so astounding to me.
I’m going to end this post with a quoted section from my paper:
The gluten-free diet is more than just a diet to be followed with an end goal in mind, but a necessary and permanent lifestyle change that has an effect on all aspects of a celiac’s life. Although an increasing number of people are aware of the word “gluten”, many still do not understand what it is. Celiac patients find themselves with the burden of educating friends, family, and strangers constantly about their disease and medical needs. They find this task to be “boring, irritating or embarrassing” with “other people’s’ reactions to being informed about CD [ranging] from acceptance to total dismissal” (Rose, Howard, 33).
These negative reactions lead celiacs to withdraw from social events and interactions as they try to find a way not to have to deal with the unnecessary burden of explaining their disease. It is easier to not go to a social event, which usually revolves around food, than having to explain the reasons behind “passing up the bread” or questioning the host about how a certain food was prepared and what ingredients it contains. The social anxiety leads “those with CD [to feel] excluded or saddened by their family’s response, or overburdened by the tasks of extra cooking and avoidance of contamination” (Rose, Howard, 38).
*Cited: Rose, C., and R. Howard. “Living With Coeliac Disease: A Grounded Theory Study.” Journal Of Human Nutrition & Dietetics 27.1 (2014): 30. Publisher Provided Full Text Searching File. Web. 21 Oct. 2016.
So tell me:
+ No questions, just give me your thoughts if you’d like!
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I get so bored of explaining to people why I can’t just ‘lick the icing off a cupcake’ as you so brilliantly put it – how many times have I heard that. Or can’t you just push the pasta to the side of the plate so you can eat the salad? Well I could, but I’ll be very ill within an hour and will feel exhausted and my whole body will ache for possibly the next 3 days, could be longer. I’m also so bored of going to events like the conference you went to, where my heart sinks (though I always expect it) when there are dishes of pasta, bread, pizza, any kind of gluten you can think of, all spread out in front of me. Thank you for sharing this, as CD is not yet a socially accepted disease. Unfortunately nobody except those who have it and their families understand and social outings often just result in me not eating, it’s safer! Happy Coeliac Awareness Week.
O yes dear! I’ve long since gotten over the awkwardness of bringing my own food to places and events when necessary. I don’t want to get sick and thus my record of “being gluten” has been kept rather spotless after almost 9 years!
It must be hard. I’m in Ethiopia at the moment and access to different food groups is limited but I love Teff and so does my bubba. Which is great, a sit’s so nutrious.
We can always make do though! Less typical American foods are better anyway!
What a wonderful and informative post. I must admit that I did not totally understand .. all about gluten. I agree with others that it is essential to educate others. I know I am more educated.
Hugs,
Bev
Great, thanks for reading, Beverly!
WOW. What a informative post. Thank you for sharing your experiences. My aunt was diagnosed a long time ago and no one even heard of gluten at that point. In more recent years it has become more known resulting in both the negative and positive. It is important to educate!
Mostly negative however because of false awareness and the “celebrity” status of a diet that is meant for those with disease.
I feel for you, you should have had options to eat (especially at a conference you were speaking at) If you has a nut allergy, would there be nuts everywhere?! It’s just not treated the same, you’re right
Exactly. Which in this case all food allergies were neglected.
So many things that the rest of the world doesn’t consider!!!!
People who don’t live with chronic illness and autoimmune disease don’t understand.
Oh I totally get that!!!
Wow. People just don’t understand that haven’t been there. It’s pretty much like everything else in this life – people that are uneducated about things make their own assumptions and opinions anyway. It is what it is, I guess. I try my best to remember “Grace.” I try my best to recognize that they simply DON’T understand what a day-to-day challenge not being able to eat what everyone else is eating. All we can do is kindly educate. Stay strong!
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Exactly, we keep forging on and preach the accurate and relevant information.
This is truly a wonderful post. I have not only shared on social networks but inboxed it to several people. The social isolation that people in your circumstances feel is very real and often misunderstood.
Elise Cohen Ho recently posted…Moving In With Her Parents Was In This Mama’s Playbook
Thank you so much, Elise!
Order something to go for someone else? That’s just… wow. In the case of the conference, though, I’m actually surprised — things I’ve attended recently have generally had a question somewhere in the registration process about food allergies.
The irony of that conference when just a few minutes before I was presenting research on just the subject 😛