As A Parent Of A Chronically Ill Child, I Wish People Would Stop Saying This

by Donna Hillyer
by Dornveek Markkstyrn/Getty

There have been so many situations in my life where, on reflection, I wish I had said something else; or, with hindsight, I realized that what I thought was an empathic comment actually missed the mark. Because the truth is, unless you’ve been in a situation, and lived it, it’s so tough to be able to imagine the reality of it.

As Oprah Winfrey said, “The struggle of my life created empathy – I could relate.” Experience equips us. Conversations with others having those experiences also help: hearing what has helped to them during a difficult time, or – as is sometimes the case – the very opposite.

Don’t get me wrong… sometimes the corkers people come out with are what gives the light relief in a moment of darkness: “They said WHAT?!! You. Are. Joking!”

But, despite the good intentions, if you’re in a vulnerable place, a poorly-judged comment can also nudge you a little further down a dark slope, and unfortunately the person’s original intent isn’t going to be visible to you when you’re in the shadow.

I’ve been on a pretty slippy parenting path since my twins (one of whom has a life-threatening incurable medical condition) arrived nearly 5 years ago. And I have to say, I’ve heard some absolute crackers in that time! So I thought I’d take my personal experience, looking from the inside out of this particular bubble, and compile a short list of some of the gems that have been said to me, that I would advise you to avoid.

1. “But he doesn’t look sick?”

Ummm, he is…? I would love for ALL the doctors and tests to be wrong, but they’re not, and I don’t even know how to reply to this question: “Erm, I’m not making it up…?” My energy is way too low for this kind of unconstructive conversation.

2. “They might grow out of it.”

Are you a renowned specialist in this exact area? I get that you’re trying to be hopeful, but, again, this conversation – with me trying to convince you I’m not naïve to listen to health professionals – is only going to mentally and emotionally exhaust me.

3. “Did you not breastfeed him?”

Just … no. Don’t do this.

4. “At least you have him for a while.”

This has been said to me TWICE. Two people thought that saying this to me would be a positive thing to say. PLEASE don’t flippantly mention the possibility of a chronically ill child’s death, a thought the parent will already be haunted – plagued – by.

5. Please don’t bring up God.

Honestly, I don’t want to be told how he moves in mysterious ways, and only gives challenges to those strong enough to deal with them, and on and on. This will make me feel all the rage. Parents of kids with additional needs are strong because they weren’t given a choice; my child isn’t going through trauma because I have good coping mechanisms that the universe wanted to test.

6. “Oh, my [healthy kid] is just like that too.”

This is a sensitive one: I know you’re trying to relate, and connect, and share your own load, and that you’re probably in a tough place too, because this parenting gig is hard. But, if I’m talking about something my kid’s having to go through that is genuinely extreme, so extreme that it could only be something a chronically ill child would have to suffer through, this just makes me feel that their struggle – and mine – is so off your radar it’s not even on it. I feel so utterly invisible in these moments.

And as for what to do, rather than not do: If you’re hanging with your friend who, on top of all the bonkers stuff that goes with parenting, has another mammoth child-related layer on top, please listen. You don’t have to question, or try to think of something to make her feel better, or have a response, or insightful wisdom — just be the ears your friend desperately needs. Simply letting her know you’re there if she needs you, and that you see her, is worth more than you can ever imagine.

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