It’s late, and I may not be articulating this clearly, but let me give this a whirl.
Chronic medical conditions, even complex medical conditions, don’t have to be so complicated.
They can be really straightforward.
Look. Here’s an example.
I have a friend who is blind.
He’s blind. His retinae don’t register light at all. He doesn’t see. Not complicated.
It’s the way the rest of the world goes about their business that makes his life complicated. The way that everyone assumes that my friend, who is blind, can see. How they don’t intentionally offer their nonverbal half of communication in their inflection, at least, if not in actual words. How Braille books are 2340183 pounds each and only contain 4 chapters, and how Reach Out And Read doesn’t buy touch and feel books or Braille books for low vision kids, so we end up giving our low vision kids books with smooth pages that offer no sensory opportunities. How there’s some software for computers but half the world doesn’t add the right tags to their webpages to allow the blind to navigate visually heavy webpages full of icons and pictures. How we say disability matters but then crowd people who are blind and have low vision, or distract their service dogs to decrease their safety.
It’s not the fact that light doesn’t get through his retinas that makes his life seem complicated to me, from the outside.
In the same way, it’s not the fact that another friend’s cochleae stopped working after bacterial meningitis at age 8 that makes her life complicated. It’s way that everyone assumes that she– a very accomplished Deaf veterinarian– can hear if they lay on their horn loudly enough and choose to run a red light. That because she can’t hear them say she talks “funny”, she also can’t read their lips.
Maybe, even if you’re here and reading this, you think I’m oversimplifying. Let me offer some less straightforward examples.
“I have autism and anxiety.”
“My kid has celiac.”
“His nephew has bipolar disorder and a pacemaker in his heart.”
“She has Down Syndrome.”
“They were born as conjoined twins and can’t be separated.”
Again, all of the people in these examples would be considered to have special health care needs. Some have a disability, others a medical condition that may or may not be considered to be a disability depending on how severe it is— and this can vary from state to state.
In every example, it’s the baseline assumptions that other people are making that tend to cause complications.
Oh.
Ooops.
Did I say ‘other people’?
Maybe I should say ‘health care providers’ instead.
Every parent reading this blog, I am sure, knows that they will be interrupted within 11 seconds of beginning to speak (a decrease from a decade ago, when studies showed that parents were interrupted 18-23 seconds into what they were saying)— and this is after being invited to tell their health care team what is going on. It’s like the knock knock joke about the Interrupting Cow, only significantly less amusing.
Why did parents lose 7-12 precious seconds to communicate? From my perspective, providers are under pressure. There’s a constant drumbeat of ‘what’s taking so long’ running through their mind, and the pressure of all the extra things they have to do creating the metaphorical equivalent of thousands of open Internet browser windows in their head.
It’s possible for humans under this type of pressure and stress to miss details, or even to simply stop listening– not because they want to, but because there just is no processing space left to listen with. Adding one more thing will create the cognitive and emotional equivalent of Microsoft’s Blue Screen of Death experience for the health care provider. Their brain will just lock up and refuse to do any more.
Here’s why this matters:
When processing space is limited, any issue that can be delayed, put off, or minimized?
I won’t go so far as to say “it will be”. I would suggest, however, that the temptation to delay, put things off, and minimize what is being said is ever present. Not intentionally, for most health care providers, and not out of malice. Much of the time, that temptation will lie in the subconscious mind, and the bias displayed by a provider under this type of pressure is not intentional.
But what it means is that the important screening questions aren’t getting asked, even when the right information is being volunteered.
As a parent, I have very little problem talking all day long about the ins and outs of how and why my Oldest Child’s pituitary gland doesn’t, for instance, produce growth hormone. (All right, the how. Nobody knows the why.).
Ask me how we’re holding up with distance learning? His primary care provider is a friend, a neighbor, someone I’ve worked with for a decade and more. I’m still going to smile and lie like a rug and say, “Fine.”
Nobody’s asking me about his eating habits, or whether we have enough cash on hand to pay the electric bill, for goodness’ sake. (I’ll tell you, though, I’d mutter something about all the bills being paid if they did.)
And many providers aren’t asking, not the kind of specific questions that get information that I believe is critical to have if we are going to level the playing field and assist everyone, no matter their race or gender or parents’ income level, in getting a good start in life.
Do you have enough to eat at home?
Do you ever have to skip meals at home?
Does anyone in the house have to skip meals so that other people have enough to eat?
Do you feel safe at home or do you worry that someone is going to hurt you or yell at you?
Is your home warm enough in the winter?
Do you have running water at home? Electricity?
Are you going to be evicted?
Are your parents having legal trouble with the Department of Homeland Security?
Is your neighborhood safe, or do you have to stay inside because you hear gunfire at night or during the day?
Is someone stealing your medicine or taking it to sell?
Where are you living?
How many people are living with you?
Do you think you might want to kill yourself or hurt yourself in some way?
Are. You. Being. Bullied???
If there was a pill I could administer to every physician in the country who sees children with disabilities and chronic illnesses, or a potion I could put in the drinking water that would change the Interrupting Cow factor that we health care providers seem to be doubling down on, and give every parent the 48 seconds they need to finish telling their health care provider the story without interruption, I’d give it.
I’d pour that stuff in the water and if everyone with an MD or DO grew gills a decade from now, oh, well.
The thing is, there isn’t a magic potion, or an experimental pill.
I can’t change this fact: parents will be interrupted, probably within 11 seconds of starting to speak.
I have been, and will continue to be interrupted, when I speak as a parent instead of a physician.
Parents will not be listened to, and one of the many reasons for this is that health care providers are under pressure.
I have not been listened to in the past, and I will likely not be listened to again in the future.
So what can we do?
We can build this reality into our plans.
We can, while we work for cultural change within our medical systems, say to ourselves, “I am going to get interrupted today. Studies show that usually happens within 11 seconds. I don’t get to control if I am interrupted, but I do get to control whether I let the health care provider set the agenda after interrupting me. I do get to control whether I finish telling my story.”
We can write down or make memos about the most important parts of our story if we are people who forget details when we are interrupted, and pass the note over to the physician, or read from those notes and memos.
And when we have not been listened to, we can add the word ‘yet’ to the end of the thought. We have not been listened to… YET. We have not exhausted our strategies: we can speak louder. We can insist. We can get a second opinion. We can tell the provider the information— repeatedly, if we need to.
Because if there’s one thing we know how to do? It’s advocate.
We can choose with our actions and our voices to let the bias of others and the presuppositions of others— particularly when those others are not seeking out the relevant information— make our complex kids’ lives more complicated.
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