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When All the Words for 'Tired' Feel Reserved for the Able-Bodied

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I’m sitting in my doctor’s office with my hand on my chest and my face twisted in a fisted grimace. I’m searching for the right words to describe the strange, heavy ache around my sternum. I know I only have on chance. Saying the wrong thing gives the doctor, who hasn’t looked at me since I entered the room, the opportunity to cut in with a lecture about how, despite all evidence to the contrary, I’m actually just an intensely anxious person.

Finally, I say, “It’s difficult to describe.”

Not quite a pain or an ache, it really is difficult to pin down. It boogies somewhere in between the two. I see the doctor roll his eyes as he continues his vigil of the computer screen, I see that light shake of the head, and he tells me – without looking at me – for the umpteenth time, “It’s probably just stress.”

It’s the cartilage around my sternum. It’s a common complaint in chronically ill patients and one of the major causes of our chest pain. It’s a recurring problem and I’ve not come for a diagnosis, but to see if there’s anything I can do to ease it. Perhaps, had he deigned to examine me, he would have had some suggestions: some light massage maybe, applying heat or cold, rhythmic dance; something. But to him I’m not longer a patient, if I ever was. I’m an unwanted obligation – a plant he’s been asked to look after that’s wilting untended.

Two months later, I’m back. I’ve learned my lesson and I’m describing with prepared specificity how my gut is cramping; how it feels like someone is stretching my guts from one side of my body to the other. I’m in excruciating pain. It’s not irritable bowel syndrome, as my doctors will tell me for two and a half months. My gut is in spasm. It wants to be active and inflamed, so it is. It’s not chronic, it lasts so long because my doctors don’t care. Once I see a doctor who hasn’t encountered me before, who follows typical protocol, I’ll have access to medication, relief, and ultimately remedy. But for now, stuck with the same old apathetic doctor, my specificity is a sign of stress. I’m told I should just get a girlfriend, because “men with girlfriends aren’t stressed.”

If my doctor actually looked at me, he’d know that the idea of me just getting a girlfriend isn’t as simple as he makes it.

Time after time, language fails me. Faced with doctors who, if we’re honest with ourselves, don’t really care, describing my baffling and changeable discomforts has left me on a hiding to nothing. Fumble over the correct definition of our pain and we’re obviously not in as much pain as we claim – give a perfect account of exactly where, how, and even why we’re hurting and we’re too focussed on our symptoms (which depending on the alignment of certain stars and how much the doctor wants to get rid of us, may or may not exist). We’re too stressed, and we’re wasting our doctors’ time.

In 1966, Hervé Bazin published an essay titled “Plumons l’Oiseau” in which he proposed the use of six new punctuation marks. His intention was to expand our written communication, utilizing a symbolic system of relating certain concepts or emotions – including love, doubt, and irony – without explicit in-text explanation. It’s one of many attempts through the years at experimental addendums to our vernacular. It didn’t catch on. But it did highlight that, for some, there are limitations in how we communicate how we feel. So how, in an age of evolving and expanding language – when our language is continuously streamlined online – how do we tell people how tired we are?

The problem with the word “tired” is that, in many ways, it’s too relatable. To different people, it can mean different things. After all, as we’re apt to hear constantly, we’re all tired. We all wake up too early, work too much, and get too little sleep. To the able-bodied, being tired is an accepted norm. So why should we get special treatment for it?

Chronic illness is almost impossible to understand without experiencing it first-hand. When confronted with our own ignorance, in lieu of empathy, we tend to equate other people’s experiences with our own. So when, with panda eyes and a restless leg, we tell Janet from accounting we’re tired, she thinks back on her own experience of being tired. She thinks of last Friday when, having stayed late at work, she collapsed on the sofa and watched “Friends” on Netflix while eat kale crisps. She fails to see what the problem is, that was a pleasant evening.

Combined with the negative reputation that seeps out of doctors’ offices and we get a kind of vacuum in which the only people who actually understand how we feel are those too ill to help us. We are precluded from communicating the gulf between tired and chronic fatigue, obstructed by the limitations in our language and the attitudes of the able-bodied. Sure, there are grades of tiredness: exhausted, drained, weary, run-down – yet we fit into none of these categories, all of them reserved for the able-bodied. In a fast-paced, performance-driven world, all those words describe the same thing: life.

When we talk about cancer, its reputation is enough to give the word and the one struggling with it immediate credence. Chronic illness, however, has become synonymous with laziness; a hangover from the early 80s, before chronic fatigue syndrome was coined and terms like “yuppie flu” were still in favor. Much as psychiatric disorders were once blamed on the tidal influence of the moon, our complex illnesses are hampered to medieval attitudes to a thoroughly modern problem.

Even without its reputation, cancer has an established vernacular that can be easily understood by anyone: the later the stage, the more severe. Even words that find use elsewhere have become intrinsically linked with cancer, words like benign, malignant, remission. Much like chronic illness, cancer is difficult to understand unless you experience it. Unlike chronic illness, cancer has no problems being recognized as both serious and life-changing. No one in their right mind would treat a cancer patient the way that most treat the chronically ill.

So how do you solve a problem like reliability? After all, we can’t very well announce that we’re “stage four tired.” In lieu of a dedicated and established vocabulary for our illnesses, how can we communicate in an effective way as to what is wrong and how we feel? Of course, there are obstacles in that the vast majority of chronic conditions don’t have a concrete cause. But as much as we, as a people, are ignorant of a lot of aspects of our conditions, there’s a willful ignorance perpetrated by those around us that is more damaging and distressing by far.

Perhaps then, the real question is, how do you solve a problem like ableism? If people were more receptive to the idea that we might actually be ill and thus more willing to listen, maybe our existing vocabulary would be sufficient. But in order to change minds, we have to be talking about our illnesses. That cancer and chronic illness have such discrepancies in their relative reputations has little to do with how the conditions affect our lives, but rather that one is quantifiable and visible in today’s detached vernacular and the other isn’t deemed worthy of attention.

It’s a sad irony how simple it is for those around us to communicate how much of a burden we are to them, to denounce the validity of our situations, and to spout their own hateful rhetoric when we can’t even tell anyone how tired we are. There doesn’t appear to any shortage in how we express disappointment.

The further I get into my illnesses, the more I am aware of just how limited our vocabulary for pain and fatigue –undermined as it is by how poorly we all look after ourselves. A new, specific vocabulary won’t change ableist attitudes, but it can help us talk about it. And if we’re having the conversations we need to have with people, in a way that they can actually understand as exclusive from their own feelings, then we can start to dismantle those prejudices that are destroying our chances at remission and wellbeing. If we’re having the conversations we need to, perhaps we can finally get the message across of just how exhausted we all are.

Getty Image by panic_attack

Originally published: April 20, 2018
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