What to Say When Your Child’s Health Doesn’t Fit Into a Neat Diagnosis: How to Explain a Complex Medical Condition
Guidance for parents who are navigating complex conversations about their children’s health.
INFORMATIVEPERSONAL BLOG
Anna Mills
1/31/20253 min read
What to Say When Your Child’s Health Doesn’t Fit Into a Neat Diagnosis
My son has a combination of fairly uncommon medical issues, and there isn't a single, major diagnosis that most people would easily recognize. His condition is medically complex.
When someone asks me what is wrong with my child after learning that he’s sick, I often panic a little. For years, I didn’t know how to respond in a way that they would truly understand. He doesn’t have a well-known diagnosis that people can easily grasp.
If I were to explain everything he's going through, I could easily give a two-hour presentation detailing his current and past medical experiences. I could discuss my theories about how everything might be connected through mast cells, but there aren’t enough scientific studies to support it yet. Most people would tune out after a couple of minutes, leaving with little more than knowing my son is sick.
So now, I keep it simple: “It’s incredibly complicated and uncommon.” Sometimes I will add: “He has a lot of doctor appointments because he needs specialists to help him.”
Most people understand that to some extent. It’s common for them to try to relate by sharing their own stories. Sometimes, you can tell they don’t fully grasp what you're going through—and that’s okay. Other times, you may realize they know someone who has struggled with multiple health issues and can sympathize, even though they haven’t experienced it directly. And then, on rare occasions, you’ll meet someone who truly understands, because they’ve been through something very similar and life-changing.
Here are some tips on how to respond to questions about your child’s illness without overwhelming people with information they won’t fully understand anyway.
1. Keep It Brief and Simple
When explaining your child’s condition, focus on the big picture rather than all the specifics. You could say something like:
“She has a very complex, rare medical condition that affects multiple parts of her body. It requires a lot of specialist care.”
This gives people an understanding that his situation is serious and complex, without delving into too many details.
2. Be Honest but Not Overwhelming
If someone presses for more information, you can acknowledge the complexity without going into specifics:
“There’s not just one diagnosis that fits. It’s a combination of issues that makes it really difficult to manage.”
This communicates the idea that it’s complicated but still keeps it relatively high-level.
3. Focus on the Impact
Instead of explaining all the medical terms or conditions, you could talk about the impact it has on his daily life:
“His health impacts a lot of areas in his life, which means he needs a lot of care and attention from different doctors. It’s a lot to manage.”
This puts the focus on the emotional or practical side without getting lost in the medical jargon.
4. Offer a General Summary
You could create a go-to response that sums up everything without getting into specifics:
“He’s dealing with a lot of health challenges, and it’s been a long road of figuring out what works for him. It’s very complex, but we’re doing our best to manage.”
This keeps the explanation general but still communicates that your son’s situation is serious and ongoing.
5. Set Boundaries on the Conversation
If you’re not ready to talk about it in depth, it's okay to set boundaries:
“I’d love to explain more, but it’s just a lot to go into right now. I appreciate your understanding.”
This gives you control over how much information you share and signals that it’s a sensitive subject.
6. Prepare for Reactions
Sometimes, people will respond by trying to relate with their own experiences. Be prepared to gently guide the conversation if it veers into an area you’re not ready to discuss:
“I appreciate you sharing that, but our situation is a bit different and really complex. I just want to make sure you understand how serious it is for him.”
These tips can help you communicate the complexity and seriousness of your child’s health without feeling like you need to explain every detail. You’re allowed to set the tone and boundaries of these conversations in a way that feels comfortable for you!
