Why I Hid My Happy Daughter's Medical Diagnosis from Her
Susan Stillman , The Washington Post | Updated: February 09, 2016 14:52 IST
Image credit: Istock
Knowledge, it is said, is power. Most of the time, this is very true. However, there are times when I feel like a little less knowledge never hurt anybody. Like knowing exactly what my teenager is up to while out with his friends. Or what hot dogs are really made of.
I applied that same reasoning to a medical diagnosis that my 11-year-old daughter didn't know she had. She was happy, largely asymptomatic and growing like a weed. I worried that the burden of knowing about her condition might do more harm than good.
With access to all kinds of health information on the Internet and a growing emphasis on early intervention screenings, many parents in my generation are finding out about diseases, disorders, delays or other conditions their children have earlier than ever. While that is critical to getting effective treatment started, it also creates a dilemma for many parents who aren't sure what or when - or even if - to tell their young child about their ADHD diagnosis, cancer or other condition.
In my daughter's case, it was Celiac Disease, a disorder in which eating gluten can damage the small intestine and is estimated to affect 1 in 100 people worldwide. The principle sources of gluten in one's diet are wheat, barley and rye.
My daughter already knew she had one medical diagnosis - Hashimoto's Disease, which affects a person's thyroid function - but she was on medication and it was effective. The only other recurring issue she seemed to experience over the years was very intermittent, minor stomach pains but, I thought, show me someone who doesn't have this type of thing, and I never really worried about it.
Last year, however, I was chatting with a close friend who is a health and wellness coach and mentioned my daughter's periodic stomachaches. My friend casually suggested that I consider cutting gluten from her diet. Normally I would dismiss the idea but I opened my big mouth and raised this topic with my daughter's endocrinologist a few days later and the whole diagnostic process was set in motion.
Nine months later - after several blood tests, a visit to the gastroenterologist and a biopsy - here we are. We were officially part of the Celiac people. It was my daughter's gastrointestinal system we were talking about, yet it was me that felt punched in the gut.
Countless well meaning people tried to console me: It's better to have Celiac now that there are so many food options; it was much harder in the past. It is better to know as a child as it will be easier for her to change her eating habits. Knowing this young can help head off more serious health issues, like stomach cancer, in the future.
I appreciated people's kindness but the truth was, I didn't want to deal with it. Aside from my own self-pity, it felt awful thinking about how my daughter would have to be hyper-aware of her health and diet at such a young age.
My husband runs an association of gastroenterologists and I told him, "I want you to search far and wide and find me a doctor who says we can blow this off. Our child is perfectly healthy and asymptomatic."
I had no such luck. They told us that while children with Celiac who eat gluten can appear to be fine, doing so continuously can cause damage in the longer-term that has been linked to an increased risk of intestinal cancers, osteoporosis, and infrequently neurological conditions like epilepsy.
Still, we held off telling her while she was away at sleep-away camp to give her a few more carefree weeks. We told ourselves we'd tell her when she came home and we went on our beach vacation. That didn't happen. The days flew by and we all indulged in a gluttonous gluten-fest and she never asked about the biopsy results.
Finally, driving home from the beach - several weeks after my husband and I knew about the diagnosis - she finally asked.
"Do you really want to know?" I asked her.
She rolled her eyes and signaled yes. Fortunately my daughter has been way more mature about it than I was when I first heard the diagnosis. We agreed to learn about the disease together, gently dip our toe into the Celiac waters and gradually make the switch to a gluten-free diet. And that's what we did.
"I think I'll start by going gluten-free for breakfast," she announced. Sounded like a good plan to me. We began the trips to the grocery stores to purchase a variety of foods and snacks for her to sample.
My daughter remarked that if she hadn't been diagnosed with Hashimoto's disease, she would not have met her endocrinologist who would not have recommended the dance studio where she happily dances now. I was struck by her ability to make lemonade out of lemons (which, luckily for her, are gluten-free).
© 2016, The Washington Post
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