The smack of a diagnosis

The unspoken truth of how a new medical label shifts the ground beneath you

The smack of diagnosis, imagined | B. Alcala

We’ve all had a medical diagnosis at some point. Maybe it was strep throat or the flu or COVID, or maybe it was a chronic illness or cancer or asthma or diabetes. Think of one of your diagnoses. I’ll think of one, too.

Let’s think too of all the people around us — family members, friends, neighbors, classmates, colleagues — who have received a diagnosis, too.

Here, let me give you space to draw a few cases of your own and of your loved ones into your mind.

Some of these labels fall off in time. Perhaps you had strep throat at age 8, around the time when you were also a soccer player and an avid fan of dinosaurs, and now you are none of those things.

Other diagnoses, though, don’t fall away. They can be a revelation and a revolution of sorts, rejiggering your life.

A major medical diagnosis becomes part of the vocabulary and the understanding of your life.

New terrain

I’ve received dozens of diagnosis in my life, most minor, a few major. Strep throat. Chicken pox. Pneumonia. Cancer.

But it’s only struck me recently how little attention is given to how such a new label changes you, especially one connected to a serious illness.

A diagnosis comes with so much:

• a prognosis (a guess for how your future will unfold)

• assorted potential medications

• assorted potential procedures

• insurance codes

• specialists

It might come with a community.

And a diagnosis often comes with feelings — of relief, of shame, of terror, of worry.

So many emotions.

When defining news is delivered, if you are lucky, a doctor sits with you for a bit and talks through what it means, what the options are, what treatments are possible, what the outlook could be (in very vague terms usually). They might extend compassion to you, in a gentle nod, or the kindness in their eyes. They might ask about your support system at home.

But even in the most generous of times, the conversation is usually not that long. It’s not the doctors’ fault. They are in a system with enormous loads of patients waiting.

That tight time (and the nonsensical nature of American healthcare insurance), though, means the emotional and mental side of the journey — parts that are not inconsequential at all — often get overlooked or by the healthcare system. And sometimes, by us patients, too.

This doesn’t just mean the diagnosis. Our entire journey, from the first worrisome symptom, is tied to our emotions and our mental processing. But the diagnosis is one milestone, a clear sign on the road.

The smack of a diagnosis

I called this post The smack of a diagnosis because of the loud explosion it can make in our understanding of ourselves, our timelines, our future. It reverberates.

With some diagnoses comes fear and worry and a long road ahead. What happens next? Will the treatment work? How will I feel? How will I keep my job? How will we afford the bills?

With some diagnoses comes immense uncertainty. No one knows how to cure this. My doctor doesn’t know much about it. How can I get better? What’s going to happen to me? What’s going to happen to my plans for the future?

There are a thousand other reactions, each dependent on a particular human and their particular reaction to a particular set of news.

Something has shifted inside you. Your system was in a state that medical professionals call strep or cancer or Lyme Disease well before a doctor spoke these words about your diagnosis to you — but your brain has new information on your possible futures ahead.

It can be terrifying. It can be bewildering. It can be immobilizing.

But a diagnosis can also contain a road map to healing, reassurance, and hope.

A diagnosis can be a relief, as health journalist Laura Anne Casey explained recently in a tweet quoting Invisible Kingdom: Reimagining Chronic Illness by Meghan O’Rourke, which is now on my reading list:

Laura Casey @LauraAnneCasey

This section from @meghanor’s Invisible Kingdom rings especially true. In my experience, it wasn’t just the knowledge I needed (though I did), but also the validation. The invalidation and gaslighting was as or more damaging as the not-knowing. lithub.com/meghan-orourke…

The validation is nothing small.

As Meghan wrote, and Laura quoted:

“Why does a diagnosis matter so much to you? a friend asked me at one point.

“I know many people who are suspicious of diagnoses—they think of them as labels that reduce or stigmatize. I knew, already, that a diagnosis was not going to answer all my questions. But I craved a diagnosis because it is a form of understanding.

“Knowledge brings the hope of treatment or cure. And even if there is no cure, a diagnosis is a form of knowing (the word ‘diagnosis’ derives from the Greek gignoskein, ‘to know’) that allows others to recognize our experience and enables us to tell its story. I felt acutely the absence of a story I could tell others. Without a story, who—or what—would help me get better?”

Our stories, carved in medical terms

And there is another hidden feeling that accompanies a diagnosis: Naming of the illness gives us words to carry to another person to help them understand. It gives us words to carry in our own minds to understand what is happening. It gives us a map to look for other people’s experiences and tips who have been on similar journeys.

Beyond the treatment and the outlook, the words of a diagnosis reshape your very understanding of your life.

Such an intersection deserves its own time to process, to sift through the pile of emotions, not just on the day or the week that you are diagnosed, but in the years and decades to come.

And here is this opening, for you, and maybe for a conversation with a friend or family member, those whom you can go two levels deeper than the pat How-are-you? I’m-fine modern couplet.

Here is door swinging into a room of contemplation, an offering to consider the undercurrent of words around your health, and what they mean to all of your body, too.

To our journeys and healthier days ahead,

Brianne