How words can wound

What I've learned as the parent of a child with a chronic illness

When your child has a chronic health condition, you have lots to do: mostly look after your kid and learn as much as you can about their illness or disability so you can do it well. But there’s another thing you have to do — talk to people about it. That can take up surprising amounts of emotional energy. Not only do you have to provide basic information, you have to correct misconceptions, endure well-intentioned but ignorant advice or suffer judgmental comments.

Type 1 vs. Type 2

Our son has type 1 diabetes (a.k.a. juvenile diabetes), a disease that is subject to huge misconceptions. One is that people don’t understand the difference between type 1 and type 2, which leads to all manner of misunderstanding. Another is that diabetic kids can’t eat sugar (or that they got it from eating too much sugar).

Type 2 is the kind that generally comes later in life and is linked to lifestyle — excessive weight, poor diet, lack of exercise. Type 1 comes out of nowhere. The cause is unknown, it’s not preventable and it’s not caused by poor lifestyle.

Harsh Words

Most media stories refer to the “epidemic of diabetes” without distinguishing between type 1 and type 2. So people think they are more or less the same, and parents of kids with type 1 diabetes are destined to endure ignorant comments. The worst I ever heard came from an Internet diabetes forum: A woman was in a store with her two-year-old diabetic son and realized he had very low blood sugar and needed food fast. She went to the dairy case, grabbed a milk and gave him some as she made her way to the cashier. At this point, a passerby said, ‘You should pay for that before giving it to him.” The mother patiently explained that her son was diabetic and needed the milk now. The passerby replied, “Isn’t he awfully young to have eaten enough junk food to get that already? What did you feed him when he was a baby?”

I hope that few parents have to endure this level of callousness. We never have, although I was once asked how my son could have diabetes when he wasn’t fat. And someone else told her child (within our son’s earshot) that he shouldn’t eat too much sugar so he won’t get diabetes too. My son could handle that. He’s a smart and confident teenager. But how would a seven-year-old have felt?

Parents of kids with type 1 diabetes are by no means the only ones who have to navigate the slings and arrows of people’s insensitivity or ignorance. Parents of kids who take medication for ADHD or other mental health problems get accused of drugging their kids. Parents whose kids have serious food allergies get asked, “Surely she can have a little bit of chocolate?” Parents of children with developmental issues must endure stares of curiosity or even disapproval if their child is making noise or crying loudly in public.

The Take-home Message

The take-home message is this: When talking to a parent of a child with a chronic condition, stop and think before you speak. And park your assumptions — many of them are likely wrong. (I misunderstood the difference between type 1 and type 2 diabetes as badly as anyone.)

It’s OK to be curious. We appreciate people’s concerned interest (just not their ill-informed advice). Ask questions, try to understand. Please don’t say scary things in front of the kids and, whatever you do, don’t judge. There may be a lot more going on than you realize.