Sitting in a coffee shop near my house, interviewing a woman with celiac disease for a newspaper feature, I casually asked her, "and where did you go for education?"
Her answer almost made me spray a mouthful of chai latte across the room.
"They gave me a list of gluten-free foods," she responded.
Wow. A piece of paper. So the foods were listed in categories. Whoop-de-do. And not all (she found out) were gluten-free.
Dagnabbit, it wasn’t enough! Where was the reassurance? The sympathy? The gluten-free menus from area restaurants? The lists of gluten-free foods at the local grocers? The tips on how to avoid cross-contamination? The easy recipes and menus to get her started? The helpful tips on how to manage meals when you have a full-time job and three small children and can no longer call out for pizza or pick up fried chicken at the deli on your way home?
And, just as—if not more—important, the resource you know will be there when you have questions or are feeling overwhelmed?
This isn’t just about celiac. It’s about the whole blasted attitude of some medical professionals when it comes to caring for the whole person. When I was diagnosed with Type 2 diabetes in 1986, I was handed a piece of paper, too. It didn’t help then, and it doesn’t help now. I’d like to think we’ve progressed in the intervening 20+ years, but apparently we haven’t.
Food is more than sustenance. It’s our childhood memories. Our holiday celebrations. Gatherings with friends.
It’s our grandmother’s egg custard when we’re sick. The cherry pie we always had when we went out with a favorite aunt. Mom’s vegetable soup on a wintery day. Turkey and pumpkin pie at Thanksgiving. Challah and chicken soup on the Sabbath table. Cake on your birthday. A grilled cheese sandwich with your tomato soup.
To turn somebody loose with nothing more than a piece of paper after delivering such devastating and life-altering news is, is, is…unkind. (And that’s putting it kindly.) I can assure you that neither that doctor nor his partners will be doing that again: I had a little “discussion” with the clinic’s marketing director.
Am I pissed? You betcha. But I’m also puzzled. I don’t understand where their compassion is, not to mention their brains. Maybe it’s just me, but how you can dispassionately (for that’s how it seems to me) send people off with no map to help guide them through the rest of their lives? Is it all that difficult to refer somebody to the proper educator? Is the money for the education coming out of their own, personal pockets?
And shouldn’t some of this stuff be common sense? I thought doctors were supposed to be intelligent. Somebody here (and, most likely lots of other places) just isn’t thinking. Celiac disease isn’t the only condition where diet is important. Diabetes (as we all know) is, too. And it’s important for people with cystic fibrosis, which not only clogs the lungs, but also obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food (people with this condition need to know how to add lots and lots of calories to their meals).
I’m sure there’s more, but those are the only ones I know of off the top of my head, except maybe for food allergies. (You never know where some of those allergens are hiding!)
As usual, I think it’s a matter of taking matters into your own hands. The problem is, you have to have some idea that there is help to be had. The woman I interviewed had no idea there was help available, or even where to start looking if she’d known it was there. The woman had been getting by with help from friends of friends. She didn’t know, until I told her last Wednesday, that there were professionals in town she could go to. I even gave her a name.
Does anybody out there remember the 1976 film, “Network,” about a fictional TV station and its memorable line “I’m as mad as hell, and I’m not going to take this anymore?”
Perhaps it’s time we rise up en masse and shout out our anger at being treated as automatons expected to blindly follow orders. While a few enlightened health-care professionals understand the importance of self-management education, too many still send people away with nothing more than a piece of paper. It’s time we all demand that we be treated like human beings.