machado: why can't doctors talk seriously about fatigue without blaming it on stress, or the kids, or alcohol, or your diet, or....?
the disconnect between how health-care providers perceive their patients' complaints of "feeling tired" and the reality often leads to a sense of isolation and helplessness.
5 minute read
the average person's tired is nothing compared to the muscle-paralyzing, brain-numbing, heavy-limb fatigue that often plagues people living with illness. getty
“many of my patients complain about fatigue, they say they are so tired, but after putting my three kids to bed, i am tired too.” this from the doctor sitting on my right, who was adding his two cents to a panel discussion about the challenge of treating fatigue in people taking medication for cancer. his forehead was shiny with beads of sweat from the heat of the giant spotlights that were shining on us. as he spoke, he didn’t notice the eye-rolls of some people in the audience — the patients. the “tired” patients.
his comment reminded me of a call i was on a few months ago with about twenty people, a mix of doctors and patients. we were discussing how the side effects of cancer medication affect the lives of the people taking them. the topic of fatigue came up again, but also anxiety and depression, and as the heads in the tiny squares on my computer screen who had cancer nodded in agreement, one of the doctors raised her hand.
“but maybe you were cut off in traffic that morning, or just having a bad day,” she said. “there are lots of reasons for feeling tired.”
come. on.
fatigue for someone with a health condition is not just feeling tired
what is it with doctors and their inability to discuss fatigue with patients without trying to reason it away and blame it on just about anything — stress, children, poor sleep, bad diet, lack of exercise, dehydration, what you had for breakfast. i get it, everyone else is tired too. we aren’t the only ones. we live in exhausting times. even research has documented that, as a society, we are more tired than ever before. but let’s be clear: the kind of tired that comes with caring for little kids is starkly different than the constant muscle-paralyzing, brain-numbing, heavy-limb fatigue that often plagues people living with illness.
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because afterwards, dad, you fall into your own bed, sleep the sleep of the dead and wake up refreshed — or at the very least, alert — and ready to do it all over again. or you go for a run. or you have a coffee. either way, you have it in you to perk up and keep going. but for many people managing a health condition, three kids — let alone wrestling them into bed — would end in an extended tko.
“why would he say that?” said a woman who recently had a kidney transplant, making a face. she had come to meet me after the panel discussion. “sometimes i can’t even lift my legs to go up the stairs.”
unfortunately, it’s not a new thing, this disconnect between how health-care providers perceive fatigue and complaints of “feeling tired” and the reality of how this exhaustion impacts quality of life. consider those who have succeeded at the monumental task of getting a diagnosis of myalgic encephalopathy (me), formerly known as chronic fatigue syndrome — a condition that to some health-care providers is still thought to be made-up. these patients know well the uphill climb of convincing doctors that fatigue is a thing — a full-on, life-affecting, frustrating, depression-inducing, still-tired-no-matter-how-much-you-sleep thing.
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people with chronic fatigue have fought a long battle to be recognized
but why is that? when we see a doctor about a headache, we generally don’t get told that everyone gets headaches (even though almost everyone does), that we should man-up and soldier on. there is usually some kind of discussion about symptoms, maybe treatment suggestions or tests booked. and yet, for some reason, complaints about fatigue, no matter how distressing, tend to be brushed off and rationalized by blaming the patient — you aren’t getting enough sleep, you’re not eating right, you’re not exercising enough, you’re too stressed, you’re drinking too much, you’re dehydrated.
there’s no question that fatigue can be a hard thing to diagnose and treat, particularly in people who have health conditions and are on medication — no one ever seems to know if the exhaustion is caused by the condition or the meds, and even if the reason could be nailed down, besides perhaps adjusting the treatment, there’s often not much that can be done about it. it becomes a bit of a suck-it-up-buttercup situation. lousy.
the other thing about fatigue is that it’s frustratingly nebulous. it’s not a tangible lump, bump or pain that can be felt, scanned or removed. it can’t be detected with a blood test. it’s invisible to the person who sees you for two seconds in their office, tapping their foot and checking their phone as you rattle off symptoms. yet, for people experiencing fatigue, it’s right there with them, all-consuming, ever-present cement shoes that make it excruciatingly difficult to have quality of life.
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certainly, the fact that fatigue is invisible — except perhaps for those who live with you and witness it firsthand (i.e., you on the sofa for days and days) — plays a role in how difficult it is to legitimize its existence to medical experts. in fact, last year, researchers compared how doctors perceived patients with me versus those with irritable bowel syndrome (ibs). they found that the doctors considered ibs a more legitimate complaint because it could be narrowed down to a precise location on the body, which was not the case with me. more concerning were findings that showed that the doctors surveyed believed that people with me had a poor work ethic because their fatigue kept them from working; that they were “lacking in stoicism”; and that they took on a “sick role,” not making an effort to get better as quickly as possible. meanwhile, ibs patients were seen as “battling” their condition and working hard at recovery.
what if we opened our minds to fatigue as a real thing, with huge implications?
well, then. if you go by this study (and there are several others like it) it seems as if unless fatigue finds a way to literally rear its ugly head, preferably in the doctor’s office so there’s an expert witness, the chronically exhausted who are hoping for help — or at least a compassionate discussion — are screwed.
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the truth is, there is no real “treatment” for illness-induced and medication-induced fatigue. sure, lifestyle changes and adjustments in dosages can help, but as a colleague of mine said mournfully over a salad — undressed because of a gastrointestinal disease: “i just want to feel the same energy that i felt before i started taking medication, except i will never stop the medication, so i will never have energy.”
but what if we opened our minds to the fact that, though we can’t see or touch it, similar to a headache, fatigue is a real thing with massive implications. and though we may not be able to treat it and make it go away, alternatively, there is empathy, compassion, and acknowledgment, all of which would go a long way in supporting patients, lessening the sense of isolation and frustration that comes with not being heard and ultimately, improving the patient experience.
lisa machado is the executive producer of healthing.ca. twitter/instagram: @iamlisamachado
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