Grant Stewart: Pain, panic, and panting—the reality of “shortness of breath”

Words have always been my thing. I studied English and I love to read. In a previous life I even had a couple of novels published. 

Words are powerful things, the story goes. Indeed. Recently I’ve been listening to the music of veteran songwriter Chip Taylor. “Fix your words”, he says in one song, a plea to choose your words carefully when you talk to anyone in any situation. Because they matter—the words and the people. “Words are hammers/ hammering nails,” he warns.

But what about when they’re not, and they need to be? What about when the words lack the power they ought to have, are not fit for purpose? What about when, to paraphrase another song, the words don’t work?

I became almost obsessively angry, recently, with the phase “shortness of breath”. It’s been in use a lot of late, of course, in relation to severe covid-19, with which I was felled just before the start of lockdown.

But what does it mean, this shortness of breath? And what do people think it means? I’ll tell you what it doesn’t mean. Shortness of breath doesn’t mean shortness of breath. Shortness of breath is when you climb the stairs too fast on a hot day or add a hill sprint to your jog.

Medical shortness of breath is something else. 

This shortness of breath had always struck me as a strangely weak term to describe breathing difficulties. Breathing difficulties are serious, aren’t they? Yes. But until this covid lark I didn’t know the half of it.

. . . And so, carried along with covid, with all the psychedelic thoughts, fears, and theories that fever, pain, and isolation invite into your head when you have a new and incurable disease (you know the feeling) came the fury that this . . . this . . . symptom I was experiencing had been named by someone who had clearly never so much as coughed up a greenie, much less struggled to maintain the breath of life.

How did this happen, I raged? How did this utterly inadequate little trickle of words, this tickle of words, this skippety hoppety haiku segment, come to stand in for such a pillar of suffering? In the context of covid, this is what those words cover:

Fear of coughing. This is the unconscious stage of shortness of breath, in that you don’t think of yourself as having shortness of breath: you’re just terrified to cough, because you’ve coughed so much that coughing now hurts. Not just your lungs, but the muscles in your chest, throat, and back are strained, tender, sore. So instead of breathing normally, you pant timidly, so the coughing won’t notice you.

Fear of turning over in bed. By this point you have realised that your lungs are in trouble. When you got into bed you chose one of several available positions to lie in. The act of lying down made your lungs shift. This hurt, made you panic, and brought on frantic panting until your lungs settled into their new position. Unfortunately, by that time, the alien covid pain in your legs, or neck, or anywhere else, had told you it was time to turn over. And it was time for the cycle of pain, panic, and panting to begin again.

Ah, you thought: this is shortness of breath—pain, panic, and panting. Nice ring to it. Hmm. I can’t see it in the literature, somehow. But I’d like to.

Fear of getting out of bed. Sometimes you have to: to get a drink, use the toilet, vomit, change out of yet another wringing-wet pyjama shirt. That means standing up, which means your lungs will move and hurt. That means walking, which means gasping for the air you need to walk. And then when you’ve drunk, peed, vomited, you need to get back into bed, and to lie down, and the cycle of pain and panting starts again.

Inability to sleep. Breathing should be something you do without thinking. When it isn’t, it’s hard to switch off.

Sheer panic. You can’t breathe: you panic. And if you’re alone, you panic alone.

Inability to speak. Breath is essential for speech. In general we have plenty of breath to go round and can chat away without consciously coming up for air. With shortness of breath, you can’t. You can puff out a word on the back of every third or fourth pant, unless you’re so hoarse that you’ve lost your voice altogether.

Inability to do. Oxygen is muscle fuel. We don’t work without it. You need water. Can you make it to the kitchen? Can you stand at the sink, or will you sink? Can you turn on the tap? Can you lift up a glass? Can you turn the tap off again? (For six weeks I thought my plumbing had gone haywire because I lacked the strength to properly turn off taps.)

So, there you have it, the reality of shortness of breath. A reality that doesn’t fit into those three weak, air-starved words.

The punchline, of course, is that it makes you wonder about how we might be failing with some of our other words. Are we giving names to symptoms and conditions that trivialise people’s suffering? Undoubtedly. When we talk face to face to patients (not me, by the way: trust me, I’m not a doctor), when we write to them and about them, are the words we use up to the job? It doesn’t take long to think of a few that could use a revisit. A follow-up consultation, if you will.

Fatigue. Discomfort. Anxiety. Stiffness. Sleep problems. Worry. Mild. Common. I’m not even going to start on technical terminology. That’s another story. 

For now, let’s think of the simple words, the ones that are used on patients commonly, maybe thoughtlessly. Let’s give ourselves a reminder of how we can, if not change the words, at least use them with an indication that we understand what they really mean. To people. Either literally or as a mental picture, why not pin an old-fashioned index card to your real or mental wall: Fix Your Words.

See also: My experience of covid-19—not just another experience

Grant Stewart, Consumer Health and Multimedia Manager, Knowledge Centre, BMJ.

Competing interests: None declared.