One of the questions that I get asked the most is “How did your friends and family respond to the news of your Celiac diagnosis?” When I was first diagnosed I had heard many horror stories of significant others/family members being…less than kind. I thought that my situation was pretty good – Mom was going gluten free with me; Sister was looking up the best gluten free cupcake recipe; even crazy Grandma bought me a gluten free cookbook (she bought one for herself, too – “I think I have a touch of the Celiac.” Great, Grandma…..). The place where I struggled was in one particular relationship. “Jessica, what’s your boyfriend like? Is he supportive?” I remember giving a lot of painful smiles. Let’s call my then-boyfriend Mike.
My doctor was thrilled with my progress. I was his star patient. He marveled at my positive attitude and how seamlessly I’d integrated the gluten free diet into my lifestyle. I began baking delicious gluten free chocolate chip cookies (Mike’s favorite) and compiled a list of dozens of gluten free restaurants in my city. Yet despite my many efforts to make going gluten free a positive experience, Mike always found ways to put me down.
He started complaining – said that I was never all that sick to begin with and refused to believe I could become ill from things like crumbs, shared cooking utensils, or a kiss. He complained about not being able to eat at any restaurant we happened to stumble upon. He raised his voice at me when (after he ate gluten-filled Chinese food) I kissed him on the cheek rather than on the lips. He told me that he hated my diagnosis and wanted to be able to kiss me whenever he wanted to. “This is your problem, not mine,” he said.
I finally came to terms with reality. This was not going to work. No matter how many times I explained Celiac and asked for his help, he showed me that my health wasn’t important to him. And this was something that I generally had control over – I had turned my life around without the need of medication or surgery. In the future, what would happen if I were diagnosed with something more serious? Would he love and support me if I got cancer? Developed Alzheimer’s? My guess is no.
I am happy to now have a boyfriend who is supportive of my needs and knows that my health is a priority. Towards the end of our first date, the topic of food came up. Hesitating slightly, I told him about Celiac Disease, preparing myself for the familiar eye rolling and huffy attitude. But it didn’t happen. “Oh one of my old roommates has Celiac Disease.” It was a non-issue. The first time he made dinner for me at his apartment (if you ask him about it he’ll blush and say that grilled cheese and soup from a carton is hardly “making dinner”) he went to the store and bought a loaf of Udi’s bread and a new pan/spatula to be used only for gluten free cooking (#SoThisIsLove).
Our loved ones may not fully understand the pain, confusion and stress that can be associated with Celiac Disease, but we can and should expect acceptance and kindness. My dear grandparents always forget that you cannot wash breadcrumbs off of meat, but they care and try to understand (and they are not offended when I don’t eat their chicken).
No one berates people with cancer. No one tries to convince someone who is prone to seizures that just a little bit of strobe lighting can’t hurt them. No one refuses to believe that heart attacks don’t exist. Why do people think it’s okay to do this with Celiac sufferers? Making fun of and belittling someone’s medical condition is emotionally abusive. Enabling them to forgo their treatment is wrong.
I can de-friend Mike on Facebook, but similar issues with close family members are difficult. Be vocal about your needs. Be patient with them (it’s a learning process). But in the end, always put your health and safety first.