By Katie Ernst for Miss Treated, cross-posted with permission
When you’re dealing with a chronic illness, there are a lot of things non-sick people say that are annoying. Things such as, “Aren’t you better yet?” Of course not. This is a chronic illness, not a you-have-it-for-a-week-and-then-it’s-over-with illness. You don’t say that, though. You smile and say, “unfortunately not.” Or friends and family might make a comment about how you’ve taken a lot of time off work lately, as if it was your life plan to become disabled. Or they might mention that you don’t go out much anymore…because clearly you prefer to stay in laid up in bed.
But the most jerkish thing people do is act like the fatigue you’re dealing with—the bone-wearying, debilitating, sometimes disabling fatigue—is equivalent to how they felt when they ran a 10k that one time. “Just get more sleep,” they’ll tell you. Or, “You need to push through it. We all get tired.” If you weren’t so fatigued you’d punch the guy right in the face. But you are, so you smile and nod.
Even worse than thoughtless friends spouting this nonsense is when you get the same thing from doctors. You’d think someone medically trained would be taught the difference between fatigue and normal tiredness, but they’re not. There aren’t even terms to differentiate the two, really. So for medical professionals and non-medical professionals alike, I’ve created a list of the top five reasons that fatigue and normal tiredness should not even be considered in the same sentence. (Other than that one, of course.) Feel free to share it with anyone who doesn’t get it.
5. Sleeping “cures” tiredness; it’s only mildly helpful for fatigue.
When you have chronic fatigue, the number one piece of advice you get from well-meaning non-sick people is to get more sleep. It makes sense. They reflect on their own life and think, “You know, when I feel tired, if I get a good night’s sleep I feel better. Sally should try that.” But that doesn’t work for Sally, and you know why? Because Sally has fucking lupus or Ehlers Danlos Syndrome or Rheumatoid Arthritis. Feeling tiredness in your muscles because you ran some extra errands today is resolved by getting a good eight hours of sleep, but do you know what is not cured by sleeping? Sjogren’s Syndrome. Multiple Sclerosis. Umm, cancer.
While it’s true that getting plenty of rest is good self-care that can reduce flares, it’s not a cure-all, and to suggest that it is is belittling. Especially considering that many people with chronic fatigue are often already sleeping much of the day. Some chronic illnesses sufferers can sleep for sixteen or twenty hours a day and still feel fatigued. Or even if they’re sleeping a normal eight hours, they may feel their worst in the morning, just when you’d predict they’d feel best if their issue was lack of sleep. And all of this ignores the fact that for some people…
4. Fatigue can actually keep you awake.
Sounds stupid, doesn’t it? After working hard all day, most people can lay their head on their pillow and be out within five minutes. Not the case with fatigue. I, myself, have a condition called lupus. It’s an autoimmune disorder, which means that my immune system literally attacks my body rather than outside invaders. It’s sort of like friendly fire in a war. My immune cells are like, “Sorry kidney! Didn’t mean to murder you when I was trying to take out that cold virus. My bad.”
So the fatigue I get stems from the fact that my body is working really hard against the onslaught from…my own body. This sort of fatigue can be so overwhelming that it’s uncomfortable. It’s almost like the tiredness equivalent of pain. It simply doesn’t feel the same as what you experience after doing a lot of cardio. It feels more like your entire life force has been sucked out of your body. It’s disconcerting.
You know that indescribable symptom you get when you have the flu? Not the runny nose or congestion. The feeling that you’re just “sick.” It’s like that feeling amplified. And that feeling is uncomfortable even if there’s not actual pain associated with it (which, with most chronic illnesses, there is anyway). This horrible feeling of fatigue can overcome you and actually make it difficult to fall asleep.
If this seems stupid and horribly counterproductive, you’re right! It feels that way to the sick person too. There’s nothing worse than being horribly fatigued, and yet not being able to fall asleep. That’s why a person with chronic fatigue will recoil at your advice to get more sleep. They’re trying and reminding them of their failure only makes them want to cut you.
3. Pushing through tiredness means you get extra work done; pushing through fatigue means you’re out of commission for a week.
This is probably the biggest pet peeve of the chronically ill: the suggestion that they should just suck it up and push through it. That is actually the worst single piece of advice you could give a chronically ill person, and this is why. People possessing average energy stores and bodies that aren’t falling apart can go for a day or week or even month where they’re not getting enough sleep. Sure they’ll feel crappy, but once they take a weekend to really rest, their body will be back to normal. For a healthy person, it might be totally reasonable to push through some tiredness to get extra work done.
Not so for chronically ill people. Being chronically ill is sort of like starting every day on three hours of sleep, regardless of how much sleep you’ve actually gotten. Strike that. It’s like starting the day on three hours of sleep plus you have the flu. A flu that might never go away or get better. (I’m a bundle of laughs at parties, let me tell you.) If a chronically ill person tries to “push through” their fatigue, they could actually make themselves substantively sicker. The immune system that was just sort of nibbling on their kidneys will now go on full attack, or the moderate pain they had in their joints will be turned up to eleven. And, as you can imagine, that increase of symptoms doesn’t just last during the period that they’re “pushing through” their fatigue. It can last for weeks because now they’ve actually made themselves sicker. Telling a chronically ill person to just suck it up and push through the fatigue is like telling a lung cancer patient to just have another five cigarettes. Go ahead! Suck that smoke through your throat hole. It won’t hurt you.
2. Tiredness is to fatigue as a pimple is to face herpes.
Hopefully this article has already made this clear, but fatigue is far, far worse than being tired. Have you ever been so tired after a hard day’s work that you literally couldn’t talk? I haven’t, and I’ve worked very physical jobs. I used to set up stages and sound systems for concerts, lifting super heavy stuff in the heat for sixteen hours at a time. I’d be sore and I’d want to get in the hot tub at the end of the day, but I could always talk. Not so with lupus. Sometimes I am literally so fatigued that it is too much exertion to open my mouth and talk. If you knew me, you’d know what a personal tragedy this is. I am a talker. There is nothing I like more than shooting the shit. My husband wooed me by staying up until noon talking to me all night. On, like, fifteen occasions. That’s how much I love talking.
Recently I created a fatigue scale after I realized that doctors don’t have one. It is as follows:
Tiredness for me maxes out at around a 4. No matter how tired I am, I could always make myself run errands if I had to. When I’m fatigued, though, it’s not just that running errands is a bad idea (which it is). Sometimes I literally don’t have the strength, coordination, or mental capacity to do it. So for any non-sick person who’s never experienced fatigue beyond a four, your advice, while well meaning, is useless because you literally don’t get it.
1. Fatigue is a daily struggle; tiredness is a temporary inconvenience.
Finally, one of the worst things about struggling with chronic fatigue is that you don’t know if it’ll ever end. Most doctors don’t take complaints of fatigue seriously, and even when they do, there’s not much they can do for it anyway. We don’t have an opioid-equivalent fatigue reliever. We don’t even have a tylenol equivalent. When a non-sick person feels tired, they know that if they get a good night’s rest or take a vacation, they’ll feel better. There is no vacation from fatigue. You could fly to Aruba and you’d be just as debilitated.
That’s why the douchy “just get a good night’s sleep” comments sting so badly. If you had even half an understanding of what it’s like to live with this sort of fatigue, there’s no way you’d suggest that. Do you really think someone is this debilitated and they hadn’t even considered, umm, I don’t know, sleeping more. Of course they’ve tried sleeping more! They’re sick, not a moron.
So please. If you’re someone who’s lucky enough not to struggle with chronic fatigue, don’t be a douche. It’s really easy. Just treat the person you’re talking to with respect and assume they have as much common sense as you do.
This is the fifth entry in Miss Treated’s WtF Series. To read it from the beginning, in which the author shares about her own struggles as someone with a chronic illness, click here.
Katie Ernst is the creator of Miss•Treated, a website devoted to fighting medical sexism. Katie graduated with honors from the University of California, San Diego majoring in Psychology. She went on to earn her Juris Doctor from Loyola University, New Orleans, graduating Magna Cum Laude in 2007. After giving up full-time legal practice because of medical issues, Katie turned her attention to writing. She’s written novels for children and young adults, and has also written freelance articles for publications such as feministing.com, CBS Philly, and numerous other blogs and websites.