Reflecting on my experiences as a parent of a child with a chronic illness, I often find myself wishing I had responded differently to certain comments. It’s challenging for anyone who hasn’t lived through such circumstances to truly grasp the reality. As Oprah Winfrey wisely noted, “The struggle of my life created empathy – I could relate.” Our experiences shape our understanding, and conversations with others in similar situations can be enlightening, helping us navigate tough times or even revealing what not to say.
While there are moments when the humor in misguided comments can provide a brief respite from the heaviness, poorly chosen words can also deepen the hurt, particularly when you’re already feeling vulnerable. Since welcoming my twins into the world nearly five years ago—one of whom faces a life-threatening condition—I’ve encountered a range of bewildering remarks. Here’s a list of some things I’d recommend you avoid saying:
- “But he doesn’t look sick.”
This statement can be incredibly frustrating. I wish all medical tests were incorrect, but that’s simply not the case. I’m too drained to engage in this kind of unhelpful dialogue. - “They might grow out of it.”
Unless you’re a specialist in this field, please refrain from making assumptions. While I appreciate the optimism, having to convince you that I take advice from professionals is exhausting. - “Did you not breastfeed him?”
Just… no. This is not a helpful comment. - “At least you have him for a while.”
This thought has been shared with me on two occasions. Bringing up the possibility of a chronically ill child’s death is not comforting; it’s a concept that haunts parents daily. - Please don’t mention religion.
Hearing about divine plans or how God gives challenges to those strong enough to handle them only fuels my frustration. Parents of children with special needs are strong not by choice; they are navigating trauma that is far beyond a test of their coping skills. - “Oh, my healthy child is just like that too.”
While I understand you’re trying to relate, comparing experiences can feel dismissive. If I’m sharing something particularly serious, it can make me feel as though my struggles are invisible to you.
So, what should you do instead? If you’re with a friend who is managing the additional challenges of parenting a chronically ill child, simply listen. You don’t need to provide solutions or wise insights—just being there for them can mean everything. Acknowledging their struggles and letting them know you see them can be incredibly supportive.
We are many unique women united by motherhood, navigating not just parenting but life as a whole. If you’re interested in further insight or resources, you might want to check out this excellent resource for pregnancy and home insemination or learn more about friends’ advice here. If you’re considering options for starting a family, explore the information about at-home insemination kits here.
In summary, while navigating the world as a parent of a child with a chronic illness can be isolating, understanding and thoughtful communication can foster connections and provide support. Let’s choose our words wisely and focus on being present for one another.