As a parent of a child with a chronic illness, I’ve often found myself wishing that people would refrain from making certain comments. Upon reflection, there have been countless instances where I’ve struggled to respond to well-meaning but misguided remarks. The reality is that unless you’ve experienced a situation firsthand, it can be incredibly challenging to grasp its true weight.
Oprah Winfrey once said, “The struggle of my life created empathy – I could relate.” Our experiences shape our understanding, and conversations with others who have faced similar challenges can provide invaluable support or reveal what to avoid saying.
Don’t misunderstand me; sometimes, the absurd things people say can bring a moment of levity: “Did they really just say that?!” However, when you’re in a vulnerable state, an ill-timed comment can deepen your emotional struggle, and the speaker’s good intentions often become invisible in the shadows of your situation.
Since my twins (one of whom has a serious, life-threatening medical condition) entered my life nearly five years ago, I’ve encountered some astonishing remarks. Here are a few key comments to avoid saying to parents like me:
1. “But he doesn’t look sick?”
Sure, he may seem fine on the outside, but that doesn’t reflect the reality of his condition. I’d love for all the medical tests to be wrong, but they aren’t. Honestly, I don’t have the energy to engage in this conversation.
2. “They might grow out of it.”
Unless you’re a specialist in this area, please refrain from making assumptions. While I appreciate your hopefulness, this kind of dialogue can be mentally draining, especially when I feel compelled to defend my understanding of the medical situation.
3. “Did you not breastfeed him?”
Just, please don’t go there. It’s not helpful.
4. “At least you have him for a while.”
This has been said to me more than once, and it’s beyond inappropriate. Suggesting the potential death of a chronically ill child is not something I need to hear; it’s a fear I already carry.
5. Please refrain from discussing God.
I don’t want to hear about divine plans or how challenges are given to those strong enough to handle them. This perspective can ignite anger; our strength comes from coping with situations we never chose.
6. “Oh, my healthy kid is just like that too.”
I understand you’re trying to connect, but if I’m discussing something truly extreme that only a chronically ill child faces, this comment makes me feel utterly invisible and alone.
Instead of offering unsolicited advice or trying to find the right words, simply listen. If a friend is navigating the complexities of parenting a child with additional challenges, let her know you’re there for her. Being present and acknowledging her experience can provide more comfort than you might realize.
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To summarize, navigating life as a parent of a chronically ill child comes with its challenges, and certain comments can be more hurtful than helpful. It’s essential to approach conversations with empathy and understanding, prioritizing listening over unsolicited advice.