Updated: 21/08/19

I’m tired too“. It’s a seemingly innocent statement that induces internal rage and frustration in those that are suffering from Chronic Fatigue Syndrome (CFS).

Unfortunately, those three little words convey a lack of understanding of the severity of CFS and the impact that it has on the lives of those who suffer from it. It’s a statement that serves to do nothing but trivialise someone’s struggle.

Chronic Fatigue Syndrome is not just feeling tired. We would give anything to feel a normal level of tired.

So if we open up to you and tell you about our struggles please don’t reply with the words “I’m tired too“.

Why Saying “I’m Tired Too” Is Frustrating

The reason it’s frustrating is that, if you are otherwise fit and healthy, you likely feel tired from doing activities that warrant feeling tired.

I know being tired sucks but if you suffer from CFS, it’s a completely different ball game. And it’s not one I would wish on anyone.

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There’s no break From Chronic Fatigue Syndrome

When you live with Chronic Fatigue Syndrome, there is no let-up. Sometimes the fatigue is worse, sometimes it’s better.

But it’s always there to some degree. Along with a multitude of other symptoms.

There’s no reprieve.

You might have just slept for 8 hours solidly but you will still wake up feeling as though you had no sleep at all.

The response our body has is also disproportionate to the activities we do. We’re talking basic, simple things here like standing up, sitting up and washing ourselves.

Things that should not be tiring can be exhausting to someone suffering from CFS.

We basically function each day feeling as though we are getting over the flu (or like we actually have the flu on a bad day).

Just because we smile and get on with life doesn’t mean we are over it. We have simply learned to cope.

We don’t have a choice in having chronic fatigue but we have a choice in how we react to it.

What It’s Really Like TO Live WIth Chronic Fatigue Syndrome

Here’s what it is really like to suffer from Chronic Fatigue Syndrome. With some GIFs thrown in for good measure because if you can’t laugh, you will probably cry!

1/ You’re eyes sting so badly that it’s painful to keep them open

Ren from Ren & Stimpy looks utterly exhaused with large red eyes
Source: Giphy

2/ You’re eyelids are so heavy that they exist in a permanent half-shut state

Boo from Monsters Inc looks very tired and blinks her eyes
Source: Giphy

3/ You’re whole body feels as though it is a tonne weight

A woman stuggles to move from her bed
Source: Giphy

4/ It feels as though someone is sitting on your chest and crushing you

A Saint Bernard dog lies on top of a man, crushing him on his bed
Source: Giphy

5/ Breathing is exhausting in itself

Charmeleon lies down utterly exhausted with the end of his tail on fire
Source: Giphy

6/ You’re body aches from head to toe as if you have the flu and your throat is often sore

Arnold from Hey Arnold lies on the sofa with a pillow and blanket slowly opening and closing his eyes, exhausted
Source: Giphy

7/ Your head can feel like it’s about to explode at any minute

An alien from Mars Attack's head explodes inside his clear helmet
Source: Giphy

8/ You’re so tired that all you want to do is sleep

A girl anime character from Sailor Moon covers her head with her duvet in bed
Source: Giphy

9/ But even if you manage to sleep loads, your body fails to recharge

A haggard looking female duck cartoon character pours herself some coffee with her eyes half shut.
Source: Giphy

10/ Sometimes you are so tired that you pass the point of being able to sleep

A female character with pink hair from Jake the Dog has a hairbrush in her hand and is brushing the air. The text overlay reads
Source: Giphy

11/ Concentration is extremely difficult and our brain can be foggy

Spongebob looks confused with his eyes half shut and his tongue sticking out. He taps a pencil on his head while staring at a notepad
Source: Giphy

12/ Sometimes you are content simply lying in bed, staring at the walls in your room because that’s all you can handle

Grumpy cat lies staring on a bed
Source: Giphy

13/ Bright lights, loud noises and smells are often overpowering and can make us feel worse

Ren from Ren & Stimpy's eyes are popping out of his head in response to a blue and yellow flashing light
Source: Giphy

14/ Over exerting ourselves can leave us feeling terribly nauseous and unwell

Emily Bunt wipes her hand across her right eye. Her eyes are shut and she looks exasperated
Source: Giphy

15/ Even talking can be exhausting, which is why socialising can be difficult

Finn and Jake the dog sit holding onto their knees. The text overlay reads
Source: Giphy

16/ Travelling in any form, even a simple car ride, can be very detrimental to our health

Chuckie from RugRats hugs his teddy bear on an aeroplane.
Source: Giphy

17/ We can be having a good day and then all of a sudden we are overwhelmed by fatigue

A cute kitten slowly closes its eyes and then falls over
Source: Giphy

18/ We suffer from post exertional malaise, which can happen up to 48hrs after an activity

Kirby lies on a pillow exhausted and sleeping (you can see him breathing in and out with his eyes shut)
Source: Giphy

19/ We face judgement from others… a lot

Jennifer Lawrence grabs a man by the collar looking angry. The text overlay reads
Source: Giphy

20/ It’s very upsetting when people don’t even try to understand what it is like

Simon Cowell looks fed up as he puts his hand to his face and rubs his eyes
Source: Giphy

Some Useful dos & donts

So next time someone opens up to you and tells you that they are suffering from chronic fatigue, here are some useful dos and donts:

1. Listen to what we are saying.
2. Simply be there for us and offer support.
3. Learn the difference between sympathy and empathy.
3. Accept that we are saying “no” to events for good reason and realise we probably feel guilty and will be giving ourselves a hard time about it.
4. Make small gestures that will help us, for example, offer to get us a glass of water or cup of tea.
5. Appreciate how difficult the simplest of tasks can be and help us out if you can.
6. Tell us that you get it and that you are sorry we are struggling.
8. Research our condition and gain a better understanding.
9. By all means, show us the latest research but don’t tell us about miracle cures and understand that diet is not a cure either.
10. Let us know that you know our struggle is real. Too many people make us feel like it is all in our head and that our symptoms are mental rather than physical.

As a final note, chronic fatigue can be a symptom of many illnesses, not just ME/CFS, and can last for months, years or sadly even for the duration of someone’s life.

Do not underestimate it and the impact it can have on someone’s quality of life. It can get better for some but realise that if it does, it will not happen overnight.

People suffering from chronic fatigue need the support and help of those around them.

Be that person.

FURTHER READING:

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Author

Hello, I'm Donna. I'm a Scottish artist who lives with chronic illness. My blog began in 2013 as a means for me to share and connect with others living with chronic illness. On my blog, I have shared my journey back to better health and the diagnoses I faced along the way. I now work as an artist and sell my products in my online shop. I continue to write about chronic illness on my blog and also share helpful posts about art, business and bullet journalling.

32 Comments

      • This is so wonderfully said. It’s EXACTLY and I mean ABSOLUTELY correct. This is how I feel coping with Fibromyalgia. Thanks for sharing.

        • Hi Tachunda, thank you for your lovely comment. I am sorry you have fibro but glad to know you can relate to my post.

    • Thank you, I’m glad you like the post. Fatigue has such a big impact on someone’s life, you are so right when you say that fact is under appreciated.

    • I totally agree!! Great words of advise!! I have fibro, which fatigue is a big part of it and relatives either ignore the fact when I have a flare up or try to tell me they were diagnosed also or what to do for it! (Diet, exercise, etc.) NOT exactly what we want to hear! Nice to hear from ppl with similar symptoms! It’s a life of hell, knowing if I overexurt myself, I will pay dearly! Just simply can’t do what I use to….Could be worse……I always keep that in mind!

  1. Love the GIFs! They all perfectly explain the chronic fatigue. I never thought I’d say I miss the days of being tired from working and normal every day life activities, but I do. I miss that feeling A LOT. The feeling of wanting to go into the kitchen to get something to eat but taking 30 minutes to work up to moving and doing so because you’re too tired and beat up from what the fibro demons dealt you today, is a horrible feeling. I am thankful for my husband everyday for being my hero and getting things for me on my bad days. : )

    • Thanks Kimberly, I’m glad you think so. You and me both, I miss it a lot. Your husband sounds like a gem, I’m lucky in that mine will do the same ๐Ÿ™‚

  2. THIS, Just all THIS! When my face feels like its dropping I know i’m on a really, really bad turn. I’m sure it must look like I;m having a stroke but on both sides of my face! Its awful, just plain awful.

    • Sorry to hear you experience that, it does sound awful *hugs*. Thank you so much for sharing this post, I appreciate it.

  3. I’m number nine almost every morning ๐Ÿ™ How about adding to the list, “Don’t ask why.” I don’t like when I say no to something or say no, thank you and it’s followed with why? If I don’t offer it, please don’t ask.

    There is a new linkup Iโ€™m hosting every Friday for spoonie bloggers to linkup posts about chronic illness. Iโ€™d love for you to join us!

    Gentle hugs, Brandi, Being Fibro Mom

    • I know the feeling ๐Ÿ™ Yes, absolutely. I think we just want understanding, don’t we? So that we don’t have to continually explain over and over or be made to feel like we need to justify why. Thank you, I’ve been a bit behind with link ups etc but I’ll be sure to check it out ๐Ÿ™‚

  4. If your husband understands and helps you out. that is a blessing. Not all or that blessed. makes everything much worst
    .

  5. Well, hell yeah. I feel it, I know it, I live it.
    Make the world listen to is.

    It takes me a week, on a good week, to write a blog.post.

    • Hey, Stephen! I can totally empathise with you having to pace yourself over a week when writing a blog post. I find mental tasks, such as writing, to be very draining too. It’s tough but it’s worth doing to spread awareness of what it’s really like living with chronic illness. Thanks for your comment.

  6. Donna, I am that duck .

    I even have the same dressing gown, my family want to burn it but it is my comfort blanket in the morning! Thanks for making me laugh and it’s not past midday yet. (Yes I am wearing the dressing gown)

    • If it makes you feel any better I live in my pyjamas and dressing gown (though mine has gingerbread men on it :)). I’m glad you could see the funny side of it.

  7. My thoughts exactly! Because of MFS/CFS my cognitive function is spotty. After 21 years of this illness, I’ve never been able to clearly explain what it’s like. You hit the nail on the head!!

    • Thanks, Sue. I’m glad you can relate and think so (though sorry at the same time as wouldn’t wish this on anyone).

  8. This was excellent and captured so many of the physical, mental and emotional challenges I go through daily! The best part was that just like me you included the gifs because keeping a sense of humor has been so vital to enduring it for years! Iโ€™ve had ME/CFS diagnosed for 13 years but I am certain that Iโ€™ve had it since a much younger age (the flares were just farther apart then.) The symptoms can be so overwhelming and difficult to articulate. I would love to share this post with all my family and friends, but I donโ€™t want to shock them with with the curse words ;), so Iโ€™ll just use it to help when Iโ€™m explaining what Iโ€™m going through and thank you for all your hard work putting this together! You are amazing for compiling all of this with ME/CFS, Fibromyalgia and Lyme. Just leaving this message has been a challenging cognitive endeavor. Anytime I write anything that is going to be observed by others I have to do it in a different application because itโ€™s a challenging process of copy and paste…rest…reread…rewrite…rest…edit…accept and move on to the next thought…rest and I know as soon as I hit send Iโ€™ll remember the main reason I wanted to leave the message in the first place and I may not have done it. Such is life with ME/CFS and FMS. ;). Thank you again!!!

    • Thank you, Jenni, I am glad you think so. I love a good gif and I think it’s so helpful to hold onto a sense of humour ๐Ÿ™‚ The symptoms can be so overwhelming and I think unless you live with it– or are very close to someone who does– it’s hard to truly understand the impact. Writing can be so challenging with brain fog. It used to take me ages to get posts together. So you are not alone there ๐Ÿ™‚ Thanks for taking the time to leave me a comment, I appreciate it.

  9. I have had chronic fatigue for almost three years. No formal diagnosis but all bloodwork an d testing comes back negative for anything else. It is pure hell. So very depressing. I cry every day because I cannot hardly function. I pray hard that I will be able to one day heal and be able to play with my grandkids. It’s pretty bad when you don’t look forward to their visits because they are too exhausting. but I do it anyway knowing I will pay for it the next few days. Why cant any doctor or health professional help us.
    God bless all of you others that have this debilitating illness.

    • I am so sorry to hear this Chris. I can relate to the frustration of test results coming back negative and being told there’s nothing wrong when the reality is you feel terrible. I am sure many can understand your struggles along with me. I have shared a similar experience and I fully empathise with how devastating it can be.

  10. I think this is really well written.
    I’m researching things for our employee network’s upcoming awareness week on fatigue. I have had fatigue on and off of different levels since 1992 but couldn’t have written about it this well. Am I able to internally share what’s on your page? You’d never know if I did but I do want to ask for your permission!

    • Thank you, Heather. I am sorry to hear you have been living with fatigue for so many years. You are welcome to share this internally within your company. I only ask that it is not shared within any printed publications or online, thanks.

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