To Those Who Think Chronic Fatigue Syndrome/Myalgic Encephalomyelitis Is Just 'Tiredness'


Tiredness. Everyone gets it. That feeling you have after a long day at work, or a restless nights sleep. We can all relate to it.

But myalgic encephalomyelitis (ME), sometimes called chronic fatigue syndrome (CFS) is just when you get tired easily… isn’t it? If you have some sleep or rest, you will feel better, surely? I wouldn’t blame you for thinking that. After all, this is what we have learned since we were children. If you’re tired, you sleep and then you feel better.

If only that were the case. I was diagnosed with ME age 23. I’d had a bad bout of tonsillitis and it left me exhausted. That exhaustion never left me.

When I was told I had chronic fatigue syndrome, I, too, assumed that I would just feel more tired than normal. Never did I think it would leave me so debilitated I would become housebound, barely able to carry out simple tasks of daily living.

There is a reason some people do not use the name CFS. It suggests that we are “just” fatigued.

What if I told you that CFS is the reason I can’t move without spinning out as if I were drunk and can’t stand up without feeling as though I am going to pass out? What if I told you the powerful opioid medication I am on often doesn’t touch the agonizing muscle spasms I get, which are so intense that one side of my body completely freezes up — leaving me unable to move and close to tears. What if I told you I never feel tired? I don’t think I have felt tired since I was diagnosed, I just feel ill.

If I was tired, that would surely mean I could sleep at night at a decent time, rather than feeling wide awake until 3 to 4 a.m. where I will eventually drop off.

You see, this illness is so much more than fatigue. Fatigue is just one of the multitude of symptoms an ME sufferer may experience. In some cases, such as mine, it isn’t even the most prevalent one.

Many people may say to sufferers, “Oh, I get tired, too.” This may well be the case, but imagine being so “tired” you can’t even lift your arms above your head to tie your hair. Imagine having to lay down and rest after a bath because it’s left you completely wiped out. Imagine being so ill you can’t leave the house for weeks, and when you do, you experience tremendous suffering for days afterwards.

It seems almost unfathomable — but to people with ME, it is very real. And there is no respite.

I can sleep for 12 hours and still wake up feeling just the same as before I went to bed. This is the kind of “tiredness” that no amount of sleep could cure. I wake up “hungover” with a severe headache, dehydrated, dizzy and and nauseous. The only difference is, I didn’t have a drink the night before. And this is just the start — everything we do brings on worsening of symptoms, which could be anything from pain to intense tremors.

There is no cure, no end in sight and every day is a constant battle against our bodies.

How I wish I was “just tired.”

What does chronic fatigue syndrome/myalgic encephalomyelitis feel like to you? Let us know in the comments.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

*Sign up for our Chronic Illness Newsletter*


Find this story helpful? Share it with someone you care about.


Related to Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

When My Son Reminded Me Why 'Sick Mommies' Don't Need to Feel Guilty

Mommy guilt… I think we’ve all felt it at some point! Mothers with chronic illnesses may have an extra layer of Mommy Guilt: We feel guilty about our illness and wonder how it might be affecting our children’s well-being. This Mother’s Day, I want to encourage “sick mommies” to remember: We still have a lot to offer our [...]

To the Chronically Ill Mother Who's Afraid She's Not 'World's Best Mom'

If you’re a mom, your children are the ones who give you the “World’s Best Mom” title. I have 22 years of experience being the daughter of a mom with myalgic encephalomyelitis (ME). I can say without an ounce of doubt that her chronic illness has never once made me rethink her “World’s Best Mom” [...]

When People Assume 'You're Doing A Lot Better Now Though, Right?'

When you are first diagnosed with chronic fatigue syndrome you don’t think about what it’s going to be like this far down the track, or at least you try not to. The doctors say the typical length of this disease is three years, and I really hope that’s still true as I wouldn’t wish this [...]
Woman looking sick and tired

What Does 'Fighting' Really Mean When You Are Severely Disabled?

Grab the cuppa of your choice, and make yourself comfy, this is a long one. But it may also be the most important and passionate thing I’ve written. I love Dylan Thomas’ poem “Do Not Go Gentle.” (Click here to go to YouTube to hear the full poem read by the man himself.) I know, [...]