I recently stumbled upon this list I wrote 6 years ago:
The top 6 most unhelpful things to hear after your child is diagnosed with celiac disease.
Wow, was I angry! I did not record the exact date on which I wrote this list, but I know it was around 3am and within weeks of my sons’ diagnoses of celiac disease (3 and 5 years old at the time).
We’ve all been there. It’s the middle of the night, and we lie in bed stewing about our current crisis. There are no distractions. We are free to analyze the painful remarks and fantasize about the missed opportunities for great comebacks. I myself was angry, worried, frustrated, and pregnant.
6. Well, it’s really just a diet. Just a diet? It is a life-long food restriction with potential medical consequences.
5. It’s good that you’re also kosher so you already know about food restrictions. Huh?
4. It could be worse. Ok, I am a pediatrician. I have treated children with devastating disease and traumatic injuries. Do they think I don’t know it could be worse?
3. It’s good that at least they both have it. Really? How is that good? Maybe it’s easier to get dinner on the table, but what’s good about having 2 kids with a chronic health condition?
2. Wow, that’s so interesting! Remarks from a colleague. Interesting?? It sucks.
1. Well maybe this will make you more empathetic as a pediatrician. What?!! I don’t claim to be perfect, but I know that as far as empathy goes, I rank pretty high. And besides, we’re talking about my own children. How does this help them? If I were an oncologist, would it be easier if my child was diagnosed with cancer?
Over the past 6 years the medical issues of my family have increased in both numbers and acuity. I have learned to accept these awkward remarks with grace. I believe that people want to say something, anything, that can ease a painful situation. So, I have learned to look upon comments like this as unhelpful rather than stupid or demeaning. Depending on the setting and my mood, I usually take a deep breath and nod or smile faintly. But I’m glad I found this list that I wrote years ago. Looking back, I see that these were well-intentioned comments made by people who wanted to make me feel better, regardless of how strange or irrelevant they sounded at the time. I am so very grateful to have these people in my life (well, most of them anyhow ), and I get what they were trying to do.
With the exception of #1, the empathy comment, that is. Clearly that one touched a nerve…