CPN | Really, Did You Just Ask Me That?

Really, Did You Just Ask Me That?

 

As much as you may miss seeing beloved family and friends during the holidays this year, you might also be a bit relieved to avoid the awkward questions. You know the ones – usually meant well, but startling in their insensitivity or intrusiveness.

There’s a moment of confusion as you process the words, you take a beat to sort out how to respond, and you wonder “Did you really just ask me that?”

Those questions pop up from all kinds of people. The next-door neighbor, the cashier at the grocery store, your cousin. Unfortunately, sometimes they even come from someone close who you thought knew better.

I often felt stymied in those moments and wished for the perfect rejoinder, so I’m sharing my take on some of the ACTUAL doozies that I have encountered…

Diagnosis

“You know, I looked up X Condition, and I think that… (your doctor gave you the wrong diagnosis, it’s mostly in your head, it’s caused by too much ketchup).”

Deep breath… Unless this person is a medical expert, their casual Googling should be filed under “things you don’t need”. If this comes from someone who is a regular part of your child’s life, then it might behoove everyone if they had more accurate information.

You can offer: “If you like, I’ll send you a link to a great website our doctor recommended that explains X Condition. We found it really helpful to understanding what’s going on.”

If they persist with the fact-free theories after that, well, now you know where they are coming from…

“I heard that the Dr. Wonderful is the best for X Condition. Why aren’t you taking your son to him?”

Of course, you want the best possible medical care for your child, but it is not as simple as calling the famous doctor recently profiled in The New York Times. Can you even get an appointment? Does Dr. Wonderful take your insurance? Would this be a one-time consult, or could you expect a long-term treatment relationship?

The fancy pedigree may be impressive, but it is not all you consider. Sometimes the “best” care is with someone who is qualified and accessible, and most importantly, is someone you trust. Your child’s medical team can also confer with Dr. Wonderful to see if they can apply his approach.

So, a succinct response might be: “Thanks, I’ll be sure to ask our team about his work.”

Treatment

“Oh, does your son have X Condition? My friend’s daughter had the same thing. They were able to practically cure it just by… (changing her diet, taking the ABC supplement, massage therapy). I think usually there’s a more natural way to heal.”

Putting aside the dubious reliability of “my friend told me…” as a source of medical information, I am all for a holistic approach to care. But no one option is right for everyone, so build a plan in consultation with your child’s doctor. Working together, you can get recommendations about what other patients have found beneficial, and you can account for potential risks of any intervention.

Share that perspective with your well-meaning advisor: “Thanks, that sounds interesting. Can you point me to where I can learn more so I can talk with our team?”

Quality of Life

“Oh my, he’s using … (a wheelchair, a feeding tube, oxygen). That must be awful, maybe he’ll get better.”

Is this wishful thinking or a legitimate question? For some patients, their capacity varies if their having a “good day”, and for others their debilities are a difficult but expected part of the condition. Pointing out a child’s obvious deficits just brings attention to a sensitive place.

By the way, this question is particularly painful if asked by a long-time friend or family member after you’ve explained this before. You may be thinking: “Weren’t you listening the last five times I described what’s happening to my child?”

Instead, you could reply: “I know the equipment can look scary. We’re trying to focus on what NAME can do. We’re really glad that he is able to…”

“Why are you always so tired?”

This just makes me want to laugh and cry at the same time. Do you want the answers alphabetically or in order of importance?

Seriously though, parenting in these circumstances is an endless barrage of time-consuming and critical considerations such as: managing symptoms and medication, juggling appointments, accommodating physical limitations. Not to mention supporting the emotional needs of your child, their siblings, and your own adult relationships. In the face of this unrelenting daily stress and worry about the long-term prognosis, it’s no wonder that rest or sleep might be elusive.

What you really need is support and respite, not snarky or clueless observations. Think of the question as an opportunity to share what your reality actually feels like, and then frame a request that might lighten your load.

“I’m feeling pretty overwhelmed lately. Would you be able to take my turn for carpool this week so I can catch a nap?”

None of Your Business

“I hurt my back recently, would you mind giving me one of your child’s pain pills?”

Just plain out of bounds!

“No, I don’t feel comfortable doing that, but I am sorry you’re hurt. ” (Even better if accompanied by an incredulous stare…)

“I heard about another boy who had X Condition, and he died. Are you worried about that?”

I think this one depends on who is asking and when.

From a casual acquaintance or stranger, it is perfectly fine to ignore the question and change the subject. (Throw in the incredulous stare too if you want…)

From someone close, this could start a valid conversation, but you get to decide if this is the right time. Do you want to go there now? If not, appreciate that this person is willing to delve into the scariest part of your experience, but kindly ask to talk about this another time.

“Thanks for asking and I’m so glad to know you’re here for me, but I’m not up for talking about that now.”

Listen for What They Mean

I do want to acknowledge that these questions often come from a place of good intentions. People are asking because they care about you and your child. They want to show that they notice what is happening, and they are trying to help.

However, there are more thoughtful ways to pose questions, for example:

  • “I just read an article about …a doctor who works with X Condition, a new treatment for X Condition. Would you like me to send it to you?”

And consider a few stock answers to the questions you choose not to answer:

  • “I don’t really want to talk about that now, but I’d love a distraction — how are you?”
  • “Thanks for the advice. I’ll consider it.”
  • “Mmm hmmm”
  • Or just the all-purpose incredulous stare…

(Rinse and repeat as needed)

And while it is NOT your job to take care of the questioner, you can focus on the underlying message behind their questions. How you answer is up to you — be direct and explain how you’d prefer to address the subject, or just respond to the part you appreciate and ignore the part that crosses the line.

If you can approach the question open-heartedly, you might be able to appreciate the effort, and find value in the connection along the way.

 

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