woman with head down and text 17 things people with chronic illnes mean when they say im tired

Everyone has said “I’m tired” at one point or another. But those deceptively simple words can have so many meanings. Without knowing the extent of the exhaustion someone with chronic illness is feeling when they say they’re tired, people may think your “tiredness” can be cured by a nap or early night, like theirs, not understanding the support you really need in that moment.

So we asked our Mighty community with chronic illness to reveal what they might actually mean when they say, “I’m tired.” It’s important for the people in your life to understand the challenges you’re dealing with and the empathy and kindness that can help you get through them.

Here’s what our community told us:

1. “Most people who are healthy don’t understand that ‘I’m tired’ is a very shortened phrase for us. When I actually admit to friends and family that I feel bad or am tired that means so much. That means I can no longer mask the symptoms I deal with on a daily basis and I need a little compassion to get through the next few hours or sometimes days.”

2. “When I say ‘I’m tired,’ I mean my body hurts to the point I can’t explain to a ‘normal’ person how bad it hurts. It means mentally, emotionally and physically I do not want to keep going. When I say ‘I’m tired’ I’m giving myself permission for a second to stop fighting my illness and to be vulnerable. When I say ‘I’m tired’ I’m trusting you enough to show you how I really feel before I get ready to get up and keep fighting again.”

3. “I don’t want to stop helping you, but I’m pretty sure I’m going to crumble if I do one more thing. So, just smile and nod as I go sit down and put my brace on.”

4. “Just sitting in a chair is exhausting. I just want to be able to melt into the floor because I don’t have the energy to hold myself up. I’m not sleepy, I’m exhausted!”

5. “When I say ‘I’m tired’ it means I don’t want to talk about it right now. It means I’m tired of the fight my body is constantly in against itself, I’m tired of being positive, I’m tired of pushing through the pain, I’m tired of never-ending procedures and continuous doctor appointments that tend to only discover new problems. I know everything will be OK and my faith will get me through this, but right now ‘I’m tired’ and don’t have the energy or the will to put that much effort in to finding the good in my situation.”

6. “‘I’m tired’ is code for: I’ve hit the exhaustion wall/power-off button; I don’t have the energy to explain the systemic overload my body and mind are experiencing; I need to be alone; I’m sorry I can’t do that for you right now, but I’m incapable of even doing that for myself.”

7. “Most of the time it actually means, ‘I know you mean well, but please give me some space. I’d like to be alone.’ Predominantly this is when I really am absolutely exhausted and have zero energy to consider those around me.”

8. “I’m mentally exhausted from having to keep it together on the surface at work, when what I really want to do is scream out loud with the pain. The majority of my day is spent ticking down the clock so I can go home and curl up and just be in pain out loud.”

9. “Half the time it means I don’t have any reason for feeling the way I do emotionally, mentally, or physically, but I feel I need to give one. The other half of the time it’s that I’m at my breaking point and there’s not enough rest or time away in the world to bring me out of it.”

10. “It’s usually my go-to response for pain, exhaustion, anxiety, everything. It’s easier than trying to explain something ‘normal’ people will never understand. Tiredness is something everyone can comprehend on some level.”

11. “I want, no need, to collapse right here. I’m in so much pain I want to cry, but it isn’t socially acceptable to do that. I can’t think straight enough to know my own name, let alone what I should be doing right now!”

12. “When I say I’m tired I mean I can’t keep smiling and acting as if nothing was happening. My whole day I try to show my best, I pretend to be the same person I was before the pain started. When I’m tired I cannot pretend anymore, I have to be who I am now.”

13. “I’m emotionally drained. But I don’t want to appear weak or go into details. Saying, ‘I’m just tired’ is simpler sometimes.”

14.I say ‘I’m tired,’ but what I mean is I am fatigued beyond exhaustion, I can barely function, I feel like I haven’t slept in days, my body and mind ache for restful rest!”

15. “When I say I am tired, it means wherever I am could make a good place to lay down and hopefully sleep. The concrete floor over there? Yeah that looks like an amazing place.”

16. “I’m out of spoons. Of juice. Of battery. I physically cannot muster the energy needed to complete the task(s) being asked of me.”

17. “I’ll stare off into the brain fog and when someone notices, auto respond, ‘I’m just tired.’ It’s so much easier not to have to explain something you know they likely don’t understand. My being tired can’t be fixed. Take a nap, cured. If only it were that simple.”


17 Things People With Chronic Illness Mean When They Say

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More often than not, chronic illness and chronic pain go hand-in-hand, so when I use the term “chronically ill,” I’m including people who are in chronic pain. My hope is that it won’t be long until these common misconceptions become uncommon ones, as people become educated about what life is like for those who have a chronic illness (117 million in the U.S. alone).

Misconception #1: The way a person looks reflects how he or she is feeling physically.

When people say to me, “You look great,” I know they’re trying to be nice, so I make an effort to respond graciously (with something other than, “Well I don’t feel great,” spoken in an irritated tone of voice). But the truth is… there I am, “looking great,” while my body is pulsating with flu-like symptoms, my muscles are aching, and my heart is pounding so hard that sometimes it feels as if it must be visible to others on the outside of my body!

When others see someone they know is struggling with his or her health, I hope they’ll remember that they have days when they leave the house looking great but feeling terrible. If they understood that this is how most chronically ill people feel all the time, this common misconception would be well on its way to becoming an uncommon one.

Misconception #2: If people’s mental state (emotional stress for example) makes them feel worse physically, then their chronic illness cannot possibly be physically based.

If you’re not sick or in pain, I invite you to try this simple two-part exercise, so you can test this misconception out for yourself. Part One: The next time you feel under stress — maybe you’re angry at someone or worried about something — stop, close your eyes, and pay attention to how your body feels. Can you feel that your muscles have tightened? In addition, your heart may be beating faster and your whole body may be pulsating. You may even have broken out in a sweat. These are just some of the ways that mental stress manifests in the body of a healthy person.

Part Two: Keeping that stressful mental state in the forefront of your awareness, now imagine that you have chronic pain and/or illness. What would happen? Your body would respond to the mental stress the same way it did for you as a healthy person. But now, that response would be in addition to your chronic, everyday symptoms. And if those symptoms happen to overlap with the physical symptoms that accompany mental stress — tightened muscles, racing heart, pulsating body and maybe even sweating — you can see how a person’s mental state can easily exacerbate the physical symptoms of chronic illness.

This is why keeping mental stress to a minimum is so important for the chronically ill. It’s important, but often impossible. Why? Because we live in the same stressful world that healthy people live in.

Misconception #3: Preparing for an event by engaging in “radical rest” will assure that when the occasion arrives, the chronically ill will feel better than had they not rested.

I can “radically rest” for several days in a row before a commitment (I’ve had some events for my new book that I’ve been doing this for) and yet, on the day of the event, feel terribly sick. Resting may increase the odds that I’ll be less sick than usual on the day of the event, but it’s no guarantee.

This misconception can lead to friendship-threatening misunderstandings if, for example, a chronically ill person has to skip one event but then not another one, even though he or she engaged in the same amount of rest leading up to the two occasions.

The truth is that the same amount of resting before each of two events may not yield the same results. That’s the unpredictability of living day-to-day with chronic pain and illness. It can lead to feelings of terrible guilt, which is why it’s essential that chronically ill people treat themselves with self-compassion.

Misconception #4: If chronically ill people are enjoying themselves, they must feel OK.

When an important occasion arises, people who are chronically ill have learned to put up with the symptoms of illness, including terrible pain, so they can try to enjoy what they’re doing, especially the enriching experience of being in the company of others. Please don’t assume that a person who is laughing is a person who is pain-free, ache-free, or otherwise feeling good physically.

Misconception #5: Stress reduction techniques, such as mindfulness meditation, are a cure for chronic pain and illness.

Stress reduction techniques can be effective tools to help with symptom relief and to help cope with the mental stress of ongoing pain and illness. However, unless a person has a distinct disorder called somatic symptom disorder (in which mental or emotional problems manifest as physical symptoms), stress reduction techniques are not a cure.

Misconception #6: Being home all day is a dream lifestyle.

Maybe. But is being home all day feeling sick and in pain a dream lifestyle? I think not. It would be wonderful if healthy people could remember that the chronically ill aren’t home all day frolicking around, doing whatever strikes their fancy. They’re often bed-bound or couch-bound… and in terrible pain.

***

My heartfelt wish is that people will become educated about what life is like for the chronically ill.

I hope that, someday soon, we can say these are six uncommon misconceptions.

This blog was originally published on Psychology Today.

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A “new normal.” We hear this phrase flow with ease off the tip of well-meaning, albeit ignorant tongues and read the quipped typing from those who hold not the faintest of clues as to what that really means.

They do not know how a “new normal” is fought for and forged over days and weeks of struggling along with the lurking companions of anxiety and depression, silent but present. They do not know how a “new normal” often means loss of relationships or how often days stretch endlessly into nights that are frequently marked with loneliness and fear.

This “new normal” is learning how life will never be normal. There is no more steady routine or predictable plans or the carefree spontaneity that life “before” allowed.

Our “new normal” is filled with the reality of an endless parade of symptoms and treatments, side effects, doctors, scripts, labs, hospitals, tests, insurance claims and denials, disability fights, seeking to explain the unexplainable and pushing through the mental fog, pain and fatigue no one can ever really describe or understand.

It’s trying to convince a doctor that the pain is real and medication is not the enemy, that you really are sick with something other than depression or anxiety and are not just lazy or lying.

Our “new normal” is spent on the inside looking out, watching the world spinning along, more often the spectator than participator even though our hearts still long for a life we barely remember anymore.

Our “new normal” is changing what we can eat, where we can go, how long we can be out, how far we go, what activities we do and how often we can engage.

The only thing constant and reliable about our “new normal” is that “normal” is always evolving, sometimes hour by hour.

We are counseled and instructed that in the midst of our grappling for some sense of stability on top of the already burgeoning, arduous and ever-changing path that is our health, we are to “embrace our new normal” as though somehow that explains away the grief etched into our hearts at the loss we must endure a little bit each day as we wax and wane along with the unpredictable nature of our bodies. It fails to acknowledge the fear of being denied care and dignity, of dismissal after waiting for help for so very long.

While we must grasp onto the footholds of hope and anchor ourselves to the days of reprieve and love and joys in this life, they will never be the same. There is nothing normal about the “new normal” and its positive censure in denying our reality serves no one.

Yes, our “new normal” is now our reality, a phrased coined that millions of fellow chronic illness warriors can hold onto as attempted descriptor for something no one can quite explain, but how I wish that it showed the truth of it all.

I wish it showed the nights we cry ourselves to sleep, rocking against the pain that the pills never took away. I wish it showed the fear that roils inside as symptoms rear their ugly face. I wish it showed the isolation that comes when it feels like no one understands, when we feel discarded and forgotten by those whose lives continued on without us and of those who quietly walked away.

I wish it showed the deep ache so many precious parents feel at the diminished presence that their “new normal” demands, how they long to play with and care for their children the way they used to or grandparents who ache to hold their grandchildren again.

I wish it showed the terrifying 911 calls and emergency room visits, the needles, scars, insidious machines and hideous gowns.

I wish it showed the phone that seldom rings from a friend or loved one calling just to check in and say they are thinking of us.

I wish it showed the days spent in bed or on the couch as we fight against this being with a mind of its own, demanding we surrender our plans and our time while our bodies cope the only way they know how as inside, a war is being waged against our very beings, mistakenly hellbent on destroying us.

There is nothing normal about the “new normal” – the greatest misnomer ever to exist.

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Thinkstock photo via A75.


Some of these are lighthearted, some are not. It may not be in my best interests for the people in my life to be reading this, but I’m in the mood to confess, so here goes.

1. My bed is my palace.

Until I got sick, I never realized that a bed could serve so many functions.

First off, it makes a great office. There’s plenty of space to spread out books and notes, and a laptop fits nicely on my reclined body. I’m writing this piece from my bed. I wrote all my books from my bed. And, in all my years in the workforce, I was never able to create such a comfortable space, complete with personally arranged pillows.

My bed is also a great dog playground. I can play “pull-toy,” I can play “tickle the dog.” The possibilities are endless.

And, of course, what better way to eat than in or on the bed?

Office and playground and eatery. What else could a person ask for?

2. I worry that I’m no longer competent out in the world.

I’m reluctant to put gas in my car because I don’t understand the new procedure. Do you swipe your credit card before you put the gas in? Afterwards? How do you hold the card so as to assure a proper swipe? How do you get that nozzle to stick in the tank without holding onto it? How to you take it out without spilling gas all over the side of the car? I feel incompetent just putting this in writing.

Then there was the time I took my friend, Kari, to an early dinner as a thank you for editing the manuscript for my book “How to Wake Up.” The bill came and I took it out of the folder. Looking it over, I was puzzled. I said to Kari, “I don’t see a place to add in a tip.” She politely pointed out that I had to put my credit card on the folder and that, after the server swiped the card, I’d get a new bill with space for a tip. Wow. I used to know that. On a bad day, this worry can escalate into fear that I’ll be treated like a child if I’m not right on top of an interaction — infantilization is the ugly word for this phenomenon.

3. I don’t shower every day.

Nope, I don’t. And you know what? My skin seems to appreciate it!

4. My dresser drawers are a great alternative to following all that YouTube advice on how to declutter my living space.

Do you want less clutter but are too sick or in pain to wrap your mind around all those YouTube videos on how to declutter your living space? For each problematic item, we’re supposed to carefully consider whether to: give it away; toss it; or keep it (in which case we’re to find its one and only proper place). Well, there’s a fourth alternative: shove it! (into a drawer). Yes, out of sight is out of mind.

5. I’m sometimes grateful to be able to use illness as an excuse for not going to a social event.

Most of the time, I’m sad that I can’t go. But I can also be glad to get out of it. The likelihood of the latter increases in direct proportion to the likelihood of getting stuck in freeway traffic (even though I’m not even the one driving).

6. When I’m alone, my eating habits are fit only for my dog to see.

When I’m alone, I often lick the bowls or plates after I’ve eaten from them. Not only is there food to be had there, but every dish licked is a dish that’s easier to wash.

7. I sometimes park in a disabled spot as a favor to the non-disabled.

I have a disabled parking placard. Unless I’m feeling very sick, I don’t take up a disabled space since I’m able to walk short distances. But there’s one parking lot in town where it’s usually impossible to find a place to park unless you have that placard. Then I use the disabled space so the non-disabled can find a place to park. Why does this always make me feel guilty and altruistic at the same time?!

8. I cut my own hair.

No, I don’t know what I’m doing, although I did find a You Tube video on cutting bangs that helped. And it helps that my hair is wavy, so mistakes don’t usually show unless they’re egregious. My bonus is that, once in a while, someone compliments me on my hair cut!

9. The author of “How to Be Sick” doesn’t always know how to be sick.

A few months ago, I began feeling worse than usual. I considered whether there’d been any changes in my life that might have triggered this downward spiral, but I couldn’t think of anything. Then I realized that I’d simply stopped taking good care of myself. I was overextending myself in every way: visiting with people for too long, pushing against my nap time and my bedtime, staying on the computer too long. I’d forgotten “how to be sick!” Within days of beginning again to take care of myself, I’d returned to my baseline.

This blog was originally published on Psychology Today.

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Thinkstock photo by Ingram Publishing


I’ve been told not to let my illness define me, that writing so often about my pain is letting that pain win. You get a lot of advice when you’re chronically ill. Some of it good, some of it confusing, some of it frustrating. And, to be honest, I’m still trying to figure that one out. In my mind, I toss it in with “think positively” and “remember there are people who have it worse than you.” It’s something that initially sounds like constructive advice, but by the time you’re through thinking about it, you feel frustrated and lost. Why? Because it’s woefully incomplete.

The truth is that, if you have a serious chronic illness, it might define you. If this illness is strong enough to prevent you from having a “normal” life, you may need to accept that this is part of your existence right now. It’s going to be a crucial aspect of your life that often refuses to be ignored. We’re not talking small life details here – we’re talking things you tell someone before you even start dating them.

Why? Because this illness likely affects the way you live your life and downplaying its validity belittles the full reality of what you awake each morning to face. It may leave you feeling worthless for being so exhausted from fighting – because why would you be exhausted from fighting a battle that isn’t difficult? How can you be so weary from something that isn’t a big deal? Why is it such a struggle to thrive? Why are you the only one failing so miserably at normal, everyday tasks?

Do you understand the mentality that this promotes? It can encourage a downward spiral of loneliness, frustration and self-hate. Suddenly the advice that sounded so good initially has merely added to the greatest fears and struggles you face. It might make you feel guilty when you talk about your illness. It might make you think twice before devoting your limited energy to raising awareness.

However, I also cannot say that this admonition is entirely false. Your illness shouldn’t be the defining factor of your identity. Your illness isn’t the only part of you and it definitely isn’t the most important part of you. You can’t replace your name with your illness. It doesn’t have to be the first thing you say when someone introduces you. It shouldn’t be. It is important to be able to talk about other things and to recognize your own identity apart from your illness.

But you know what else? It’s OK to find comfort in putting your feelings into words. It’s OK to speak about your illness enough that other people know they’re not alone and know you’re someone they can talk to when they’re going through the same things. It’s OK to advocate for people who fear speaking up for themselves. It’s OK to help your loved ones understand what you’re going through by being honest. And it’s OK to just have really terrible days where you need to vent and cry and be hugged without being made to feel guilty for feeling the pain that you’re enduring.

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Thinkstock photo via Tomas Marek.


I was never big into napping. On the contrary, I struggle with insomnia, and I used to not be able to sleep at night if I slept at all during the day, even with my sleeping meds. Lately, one of the more difficult things for me to come to terms with is how incredibly fatigued I get.

Over the last three months I have had to lie down and rest at some point in the day every day. Sometimes I sleep, sometimes I just lay there. On a good day I can go all morning without having to rest, but will inevitably need to lie down when I get back to my dorm. On a bad day I need to rest after taking a shower. Due to this I often become upset with myself for having to rest when there is work I really should be getting done.

Going from having PTSD to a chronic illness hasn’t been easy. For a long time I was not a fan of my body. I felt like my body was the enemy, the scene of my attack I couldn’t escape from. I had spent years ignoring the needs of my body. Now I am having to learn to listen to it and care for it.

I am learning that my body, though it doesn’t always comply with what I might want, is not the enemy. I am learning to remind myself that I am not made less for taking the time to rest and give my body what it needs. I am learning that advocating for my physical health is no different than the advocating for my mental health I have grown accustomed to. I am learning it is OK to ask for help. I am learning it is OK to not be able to do everything every day.

I am nowhere near perfect at this yet. I’m not even good at it yet. The days I am angry with myself outnumber the days I am patient. Some days I need to seek out help to remind me of these things when I simply can’t convince myself, but I am trying and I will continue to try because this body’s not going anywhere. So for now I will write this mainly so I can reread it.

I went back and forth debating whether or not I would post this because I have a big problem with feeling like I complain too much, but maybe, just maybe, it can help someone else.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via KatarzynaBialasiewicz.

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