I’m feeling kinda sad today, ready to crawl into a hole and discuss with no one that I have Celiac disease. I put up a good front, but truthfully living with Celiac disease or gluten intolerance is a challenge. And a big part of that challenge is the people who make fun of it. Why is Celiac disease funny?
The media is full of stories right now poking fun at gluten-intolerance and Celiac disease. Restauranteurs are complaining about accommodating food allergies and intolerances. Joy Behar stated on TV today that Celiac disease is baloney and people ordering gluten free in restaurants are irritating. Why is Celiac disease funny? Do you joke about cancer? How about infertility? Do you think that’s hysterical? How about chronic, unexplained vomiting? That’s a hoot, right? Or what about anemia so severe a blood transfusion is ordered? You’re rolling on the floor laughing now, I just know it…. Wait, you’re not? Oh, good, I’m not the only one who doesn’t find the humor in Celiac disease, who doesn’t find anything about Celiac disease to be funny. All of those medical issues I mentioned, those are part of my family’s history with Celiac disease. None of them are funny.
I sat at my computer yesterday for over two hours trying to write a blog post featuring my top five picks for dining out gluten-free during Kansas City Restaurant Week. There are so many great options. You know it’s my belief Kansas City has many of the best restaurants in the country. I dine well here and the chefs take great care of me. If they complain, it’s never been to my face. I need to believe they don’t, that the kitchen staff doesn’t begrudge me or the genetic disease I inherited. But you know what kept me from writing that post? One waiter in one restaurant.
Last Friday, the first night of KC Restaurant Week, I grabbed a late dinner with friends. I asked our server in a restaurant which has a clearly-marked menu for gluten-free items if he would please let the kitchen know I’m not gluten-free by choice, I have Celiac disease, please be cautious. In what I can only hope was an attempt to be funny, he said, “Oh sure, I’ll let them know. They’ll cuss and stomp but they will take care of it.” I had a great meal at that restaurant, but I just couldn’t find it in me to suggest to any of my Celiac readers or those who avoid gluten by medical necessity that they subject themselves to that. It’s hard enough to live with an autoimmune disease, it’s hard to have to say it every.single.time you eat out. But to get that kind of response? I’d rather stay at home and cook for myself. And that sucks because I love dining out.
To Joy Behar, to the food pundits who question why any of us eat gluten-free, to those who think having a disease is funny, I want you to know it’s not funny. I want to be like you, able to eat out with my friends and family. I would love to be able to grab a meal anywhere without planning ahead, without the fearing of becoming ill. I would give anything to have that sense of normalcy in my life. But that is not how life has played out for me and the millions like me who have a disease that can only be managed by strictly eliminating all gluten from our diet.
It’s not funny.
Please stop making fun of a disease.
You are way too kind. People need to find something better to do with their time. Food allergies, intolerances or diseases are no laughing matter!
Oh, I have my unkind moments. I try to keep them in my head but yesterday felt really challenged. I did extend a lunch invitation to Joy Behar. It was sincere, I would welcome the opportunity to chat across a table lined with food that is safe for us both to eat. I’m going to keep trying to gently educate those who don’t get it, who seemingly don’t care about the challenges many face. You are right, Kathy, it’s not a laughing matter.
Well said, Johnna! What kind of person dumps on others for medical conditions? (answer: a yucky person)
Thanks, Cheryl. I think you’ve nailed it–it’s more a reflection of the person who said it than it is a reflection of those living with a medical condition. Yucky is spot on!
Add to the “would you like to have” list the constipation and diarrhea (at the same time, persisting for weeks) and I’m just intolerant! No, I don’t miss gluten but I do miss the ease of obtaining food! Must plan ahead!!
I enjoy the planning ahead, the discovery phase of planning a trip out of town or discovering a new restaurant in my own city. I don’t enjoy snide comments from people like Joy Behar or snarky waiters. I wish they could understand symptoms, that they could hear exactly what you’ve said, Lynn. No one would wish that upon anyone!
Bravo, Johnna, you’ve written so well what I think many of us are thinking. I saw the clip that Gluten Dude posted about Joy (what an ill chosen name), and yes, I get that she is an attention seeker, but really, that was totally uncalled for. She is not only displaying her ignorance, but arrogance too. Sadly, some people just don’t get it. I seldom eat out, for that very reason.
It’s a shame that Celiac disease can be socially isolating because of people like Joy Behar and those who just don’t get it. I love to travel and try new restaurants everywhere I go, but now lingering in the back of my mind is her comment about people who order gluten-free food being irritating. It just feels better to lift people up, there’s true JOY in that. I hope she finds it. 🙂
haha! Yes, one can only hope that she will live up to her name 😉
Oh yes, I reblogged your post on my blog.
Thank you!
So I understand your need to be careful when dining out, I understand you being taken aback by the stupid comments by a lame waitperson but really? Who cares what Joy Behar says? She’s a comic and that’s her job to poke fun at everyone. She’s a a rough cookie with seemingly no respect for anyone but that’s her MO. Does she really have any affect on anything?
Maybe I’m missing your point? Is it that her comments can create more delays in getting food places, people to respect your disease? Seems there are lots of food allergies that need attention and can all restaurants be held accountable for any and all such things? My view… if they state they are cognizant of a certain food allergy they should be held accountable to that, if not a posted item… buyer beware.
Funny or not why waist your energy on lame folks? Life is too short! I do feel for you and your eating condition but I know kind folks like you can make a difference but it will take time.
I’m so glad you asked about this, Robert. Hundreds of us who living with Celiac disease have attempted this week to right what Joy Behar said. And here is why it’s important:
If she joked and said, “I find people who have cancer so irritating when they ask for chemotherapy. Cancer is just a bunch of baloney! It’s not a real thing!,” then there would be public outrage. See, gluten-free food is the only way to manage Celiac disease (and to prevent an onslaught of diseases and ailments including digestive cancer). She made a joke (a joke without a funny part at best, perhaps more commentary) about a disease that is real. She mistook a disease for a fad diet.
The challenge for those of us who eat gluten-free by medical necessity (whether that be because of Celiac disease, non-celiac gluten sensitivity, gluten intolerance, wheat allergy, management of Crohn’s or colitis, symptom reduction in a long list of autoimmune diseases including rheumatoid arthritis…), is that many are eating gluten free foods as a fad diet. Never can I remember a time when something medically necessary became so tied in with a fad diet. And now because of this, many are questioning the legitimacy of Celiac disease and the long list of other health concerns I listed above. Joy Behar questioned the legitimacy of a disease that has been known since 1888 and now further research shows its existence in the 1st and 2nd century AD. It’s not baloney, as she claimed.
I would like to think I am not wasting my energy advocating for myself and for others like me. People who are already questioning the legitimacy of Celiac disease are further encouraged in their thinking when they hear people like Joy Behar. I will continue to use my voice and my energy to let anyone my words may reach know that what she said is a lie, not funny and Celiac disease needs to be understood. For every person who has had their mother-in-law say, “Oh, come on, just one bite won’t hurt,” I’ll be right here to say that it will. For every person who has had their food choices questioned loudly at a holiday dinner, I’ll be right here to encourage and applaud them for doing what’s right for their health. From where I stand, it’s not a waste of energy at all.
My fella chimed in to say it’s like defending a copyright or a trademark. If we don’t stand up for what is right and true, eventually it won’t matter. We will be relegated to eating only at home, no opportunity for a celebratory meal out with friends and family. No chance of openly discussing our health without fear of judgment or snarky backlash. No chance of ever being able to safely accept commune at church. We are making progress and have to keep on keepin’ on when it comes to people like Joy Behar whose voice reaches much further than any single one of us.
Glad you removed my last comment as sometimes I forget not all folks like colorful language.
One note… I didn’t mean for you to think you were wasting your time but more along the lines of why bother with that dummy she has no real creditablity.
I absolutely get what you are saying, Robert! Read my post from yesterday for more on that. I’m stepping back from the noise in all of this and focusing on food and travel for awhile. There are too many opportunities to advocate, to try to shout louder than the attention whores, right now.