Top 6 Most Unhelpful Things to Hear After…

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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…

5 thoughts on “Top 6 Most Unhelpful Things to Hear After…

  1. As a mom of a newly diagnosed kids with celiac (age 13) I have mostly been met with confusion since folks don’t really know what it is even though they know that there are more GF foods around. Thanks to Debbie (love ya!) I got a quick education in GF and find that I now educate others–the ones with the silly, ignorant comments. Once they understand what celiac is and isn’t and how it affects daily eating choices, they are more empathetic. Keep going Debbie–your experiences and insights educate others…and that’s what changes perceptions, reactions, and acceptance.

    • particularly like the comment about both children and cancer. I am old friend of your husband’s. My colon was removed because of untreatable Ulcerative colitis 12 years ago when I was 34. I had a 5 and 8 year old. My daughter was diagnosed with UC when she was 9. She’s 20 now. My mother has had severe Crohn’s forever. My son had something called PFAPA syndrome for the first 7 years of his life—so we are waiting….eventually we figure the IBS associated with the PFAPA, AND the fevers chills, mouth sores, swollen lymph nodes and joints will turn into something. I’ve had 8 follow up surgeries, after my colon was removed, my daughter is maintained on meds–LOTS of them. Last year we found out she was GLUTEN INTOLERANT. NOT CELIAC, just INTOLERANT. –still requires reading ingredients etc. PLUS, she’s 20—-so most of the time I bake her foods myself because A)THE TASTE! and B) CALORIES AND FAT MATTER if you are 20!–BELIEVE ME—WE GET IT!!!!!!!!

      • Allison, thank you for sharing your story. Although the treatment is better now, colitis remains an awful disease. I wish the best for your family.

  2. I can tell you from personal experience…you have always had a tremendous amount of empathy for your patients and their families. The first time I brought Max to see you, when Max was almost 3 months old, was the first time I felt “heard” as a parent. I will never forget what you said to me during my first visit: “I know that there must be something wrong. A parent doesn’t come in this upset and concerned when everything is OK. We’ll figure out how to help Max…and you.”

    I have certainly had similar “stupid comment experiences” with people who learn that Max has Aspergers and ADHD. Apparently, I’ll be a better teacher based on the knowledge that I will acquire from my experiences with my own child. Huh?!? I like to believe that when I’m with other people’s children, I give them 100% of my attention and concern. Interestingly, none of the people who have made such comments have actually been parents of my students. They are generally people people who don’t know my family or me well, and feel the need to say “something”.

    • Thank you for the encouraging words Jen. You have always been such a great advocate for your kids, and of course they have benefited from this. You are a good role model to others.

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