18 People Describe What Chronic Fatigue Syndrome Feels Like

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Chronic fatigue syndrome is not simply being “tired.” It’s a debilitating chronic illness with symptoms that affect sleep, concentration, pain and energy. More than one million Americans have the condition, according to the Centers for Disease Control and Prevention.

Because chronic fatigue symptoms are typically invisible and thus misunderstood — or even dismissed — by people who don’t have the condition, The Mighty asked our readers as well as the ProHealth community to describe what chronic fatigue really feels like.

Here’s what they told us:

1. “The best way to describe chronic fatigue is looking through a foggy glass every day. Nothing ever seems real; it always seems dreamlike.” — Kathrine Elise

 

2. “It feels like I have concrete in my veins. My legs are heavy and my arms do not want to move. I ache. Trying to fight off sleep is fruitless sometimes; best to give in before I pass out.” — Judith Brain

3. “Imagine plugging in a dead cell phone over night. When you awake, you expect it to be at 100 percent. But when you wake, it’s only at 9 percent and you have to try and function on that 9 percent. You’re never fully charged.” — Michelle Lewis

4. “Chronic fatigue feels like I’ve gotten hit by a truck. It doesn’t matter how much sleep you get. My body feels heavy, and it’s a struggle to have the energy to do anything.” — Megan Rosvanis

 

5. “It feels as though days have no beginning and no end. Very much like not being able to participate fully in your own life due to the overwhelming weight of the perpetual, debilitating exhaustion.” — Kaitlyn Michaud

6. “I often feel like a limp dish rag. It’s hard to put one foot in front of the other and to sit up for long.” — Sharon Anderson

7. “It feels as if you are walking through mud. The mud is up to your waist and you can hardly move your legs. Your eyes feel like they weigh 100 pounds and you can hardly keep them open.” — Hannah Waldron

 

8. “Fatigue is an invisible full length cloak, weighted all around so your reality is this heavy, filmy, dense shroud. Wearing it constantly saps your energy, but there is no clasp to remove it from your body. It makes movement slow, awkward and exhausting. The cloak of fatigue grows tolerable at times, but there is no shrugging off the weight completely.” — Erica Cai Fish

9. “It’s like swimming upstream every moment you’re awake and your brain is in a fog like when someone hasn’t slept for two to three days straight.” — Oriana Hill

 

10. “No amount of sleep I get will be enough. That feeling people have first thing in the morning after a bad sleep is what I have all day, every day.” — Calliope Krystal Pia Kilpeläinen

 

11. “A cross between the flu and being intoxicated 24/7.” — Twilight Maher

12. “It’s like when Superman gets to close to kryptonite. It feels like the energy is literally being sucked out of my body.” — Ashley Garcia

 

13. “It’s like a cross between a pin cushion and a tanker running over you 10 times forwards and backwards, plus a fluffy cloud inside your head not deflating until you move… then pop!” — Robyn Ager

14. “Imagine having to lean against your desk at work in order to sit up, and having to prop yourself up on your forearms at the sink so you can wash dishes, budgeting trips up and down stairs and having to rest after you shower.” — Eleanor Martino

 

15. “It feels as if you moved an entire house full of furniture up five flights of stairs by yourself.” — Denise Noble Hall

16. “Doing everything a ‘normal’ person does… in a vat of Jell-O.” — Emily Matejic Souders

 

17. “Like the sun never comes out, the Folger’s never brewed and like I live in a constant fog.” — Tiffany Irvin

18. “Walking for five minutes feels like running a marathon.” — Sarah Norfolk

 

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To the Person Who Told Me My Chronic Illness Is ‘All in My Head’

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I don’t like talking about being chronically ill, almost as much as I don’t like being chronically ill. I have never liked talking about it and I probably never will. I accept it’s a major part of my life, and while it has helped shape me as a person, I will never allow it to define me. So if I decide to confide in you, whether I tell you I’m nervous about an upcoming appointment or I ask you if you have any medicine for my brewing migraine, I expect you to understand I’m not doing it for attention — I’m doing it because I need help and I really trust you.

When I pluck up the courage to mention having long-term health conditions, more often than not I get comments like, “But you look so well,” “You’re too young for that” or “I’m sure it’s all in your head.” And while you may have good intentions by saying these things, I could really do without these judgments.

I have been told by someone I would have considered a friend that all my chronic fatigue syndrome, chronic migraine, irritable bowel syndrome and juvenile rheumatoid arthritis symptoms were psychosomatic, because she’d just learned about it in a psychology lesson. When you say these things, it really does make me feel like I’m a fraud. When you belittle me after I trusted you enough to speak to you about something so private, you’re basically telling me I’m a liar. Do you really think if I had the control you seem to think I have over my illnesses, I would choose to be in pain 24/7, choose to be too tired to go out with my friends and family, choose to feel so awful all the time that I have to convince myself to get out of bed, or choose to take so many pills and medications I’ve lost track of them all?

While you probably don’t recall what you said or even remember that we had a conversation by the time you got home that day, I will never get that pleasure. Because now, every time I see you, all I will be able to think of is how you made me feel. When you tell me it’s all in my head, sometimes I do wonder, “What if they’re right? What if this is all my fault?” When you’re questioned on an almost daily basis about your health and have been told there’s nothing actually wrong with you by people who have never even heard of your condition, it really takes a toll. Every time someone says something negative about your health, a little piece of your self-belief gets chipped away. Every day, my happiness and self-confidence that I feel make life worth living are whittled away by other people’s ignorance.

I can’t help but wonder if you would be so quick to judge if you had to live like me for a day, or for even just an hour. Would you find it so easy to say it was all part of my imagination? Would you think it would be OK for someone to say the things you said to me?

So next time I, or anyone for that matter, opens up to you about their health, please just take the time to realize that speaking to you about this is probably one of the hardest things they will have to do all day. Please don’t make comments without thinking about them first. Please don’t jump to conclusions about things you have probably never heard of. But most of all, please just be understanding and say, “I’m here for you.”

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? 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.

Lead photo source: Thinkstock Images

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To the Person Who Told Me ‘You Look Too Well-Presented to Be Sick’

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woman smiling
Kate smiling.

“You look too well-presented to be sick.”

Why thank you for your compliment.
I thank you for your thoughts.

I thank you for noticing the effort it took
To make it out of my house.
The hour it took to shower and dress,
Then lie down on my bed.
The time to dab some makeup on,
And painfully do my hair.
The way I need to hide the nausea,
The breakfast left behind.
The excruciating pain that jolts my joints
That seized up on the drive.
To compensate for the slowed cognition,
The fog that clouds my brain.
The medications that sway my step
And make me live on edge.
I’m glad that I can hide this truth…
It is better left unseen.

“You look too well-presented to be sick.”

Why thank you for your compliment.
I thank you for your thoughts.

I thank you for noticing the values I hold dear.

They told me I needed to be at this meeting,
And so that is why I am here.
I turn up to my appointments.
I submit my paperwork on time.
I do my exercises,
I take my meds,
I mostly rest when told.

Yet turning up for this meeting,
Dressed and prepared to talk,
Has meant this is the only thing
My body can do today.

I am here before you in this moment,
A glimpse of me in my life.
I am a professional by education.
I am now a professional in sickness, too.
I pulled myself together,
I sacrificed to make it happen.
I went all out to be here.
You will not see what I couldn’t do
To make it all this way.
The cleaning, cooking, shopping
All left for others to do.
The future dreams left unfulfilled.
Yet I made it to this meeting,
You had better make it good.

“You look too well-presented to be sick.”

Why thank you for your compliment.
I thank you for your thoughts.

My age, my race, my education
Does not change a single thing.
Whether I ate all my veggies as a child
Or left the broccoli on the side.
Running a marathon, or lifting weights,
Or simply on a stroll,
This disease does not discriminate.
It does not pick and choose its playmates.
It takes each one of us captive,
It chooses how it takes its hold.

“You look too well-presented to be sick.”

Why thank you for your compliment,
But have you stopped and thought…

What does a sick person really look like?
All spotty and pale?
All woe to the world?
Or do I need to leave the house in my PJ’s
To make you tick the box?
Do my actions and my values whilst I am sick and ill,
Do my actions and my values need to change at all?

Yes I am sick and downtrodden.
My world has fallen apart.
My dreams, desires and life are on hold,
And I feel like rubbish all the time.
Yet I have hope and new formed dreams,
A future and a life.

So thank you for your compliment…
I must do chronic fatigue syndrome well!
If I can pull off looking this well
I trust that this is swell.
But maybe your thoughts towards sickness
Need to change as well.

So thank you for your compliment,
I thank you for your thoughts.

To me it shows that understanding
By health professionals and government agencies
Has a long, long way to go.

But thank you for your compliment,
Because obviously I am pulling off sickness like a pro!

Follow this journey on Make It, Bake It, Fake It.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? 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.

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17 Secrets of People Who Live With Chronic Fatigue Syndrome

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Chronic fatigue syndrome (CFS), also known as Myalgic encephalomyelitis (ME), is an invisible illness that comes with a wide variety of symptoms. As such, it’s a condition surrounded by a lot of misunderstanding and false assumptions (like the idea that it’s “just tiredness”).

The Mighty partnered with the Chronic Fatigue Syndrome & ME by ProHealth Facebook page to ask people who live with CFS what they wish others could understand about their condition.

This is what they had to say:

1. “It is a real illness.” — Kate McEvoy

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2. “It shuts your brain down if you push yourself. It’s horrible and scary when you can’t make sentences and form thoughts and solve problems. It’s really disturbing to lose your fine motor skills, your balance, your ability to stand. It’s not fatigue; it’s a brain malfunction we’re dealing with.” — Diana Sklans

3. “It never, ever goes away. Absolutely everything we do, big or small, is in spite of this.” — Nic Fitton Davies

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4. “The triggers are not always the same.” — Wendy Hill

5. “Fatigue isn’t just tiredness; it’s so much more than that. The brain fog takes over. People don’t understand how much of a struggle it is to focus on the simplest of tasks.” — Kirstie Cornwall

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6. “There are dozens of symptoms (like the roof of my mouth peeling off in strips when I’m going into a crash, the constant fever… frequent and regular migraines, adrenal fatigue causing panic attacks…).” — Sarah Rake

7. “My exhaustion impacts every facet of my life. I am too tired to get out of bed and get dressed much of the time. I would love to be able to go back to my previous high-activity life and job.” — Ginger Vaughn

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8. “I secretly covet hearing how anyone appreciates what I’ve done because it’s really an effort and I’m going to pay for it later. So if I hear that someone appreciated my time and effort it makes me feel better.” — C Angelique Ruff Smith

9. “I’m not lazy. I love be active, have a clean house, play with my children and do so many things, but I just can’t be the same any more.” — Sandra Barreto

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10. “The pain controls my life and my moods, as well as my activities.” — Iva Smith

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11. “I’m still pretty much the same person, but I can’t just go out and do things with you like I used to. Remember the person who worked like a dog to get better and better in her chosen field? Went out and danced until 3 in the morning? Walked half an hour to and from work every day? Travelled across town after work to do a 90-minute yoga class and then walked half an hour home? Sang in the shower and did community singing classes, with a feeling of joy in her heart? I’m the same person inside, even have the same strong personality most of the time so that might fool you, yet the reality is I’m physically far more delicate, sensitive and barely able to deal with the necessities of life.” — Fiona Marsbar

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12. “I may feel good one minute and horrible the next. I may or may not cause it by attempting to be productive. I may be resting. There is no explanation.” — Melissa Tiller

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13. “I may look totally normal, but there is nothing totally normal about this disease or how I feel on a daily basis.” — Cristine Shuldberg

14. “There’s no way to understand it. It is constantly changing and always hard.” — Candra Hamil

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15. “There are times that I feel like if I close my eyes I will die. It is nothing like regular fatigue from overworking your body.” — Wanda Copley

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16. “We didn’t sign up to be sick. It’s not like we just woke up one morning and said, ‘Today’s the day that I choose to become ill, exhausted, confused and disoriented.’ I can’t speak for anyone but myself, but I would do anything to be able to do half of the things I was once able to do.” — Deborah Poole

17. “I am not making this up.” — Kathi Brill

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*Answers have been edited and shortened. 

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Surviving Holiday Party Small Talk When You Have a Chronic Illness

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The holiday season is well and truly here — a joyful time full of many festivities, parties, catch-ups, events and family reunions.

It can be the worst nightmare for a person with a chronic illness!

Not only is this season a physical challenge for managing energy levels, stress, health and dietary constraints, but it is also a season when you are bombarded with countless occurrences of the dreaded small talk: the painful, superficial conversations you have with new acquaintances and people you only see once a year.

There are a number of practical ways to make these conversations and events somewhat manageable.

1. Find a quiet place to sit, so you can conserve some energy and not have your cognitive function battling the additional noise.

2. Avoid alcohol which can exacerbate symptoms or react with medications.

3. Eating beforehand, so your stomach isn’t grumbling as plate after plate of food that isn’t on your specific diet pass by.

4. Go to the event with a good friend or partner, who is happy to help you escape when the evening or conversation becomes too much.

These are all useful, practical ideas. However, it is the content of these conversations that are the real challenge.

Distant relatives, partner’s colleagues and long lost “friends” all want to know the same two basic questions: “How are you?” and “What do you do?” These are both perfectly reasonable questions in themselves, but when your days, weeks and months are primarily spent in bed, at medical appointments or sometimes in the hospital and you feel like you have been running a marathon while having the flu, how do you respond? Yes, you have made it out of the house and to the event, and yes, you have made an effort with your makeup, your outfit and your plastered-on smile, but the reality of how you are and what your year has been like is a far cry from pleasant, superficial small talk.

So, how can you respond to these questions?

Let’s start with the first one: “How are you?” is pretty much guaranteed to start most conversations. There are a few of possible responses:

1. “I’m well.” 

This could be interpreted that you are a healthy individual without any cause for concern. However, what you probably mean is that in the scheme of things you are actually doing pretty well, you are out of bed today, the pain is manageable and things could really be a lot worse.

2. “I’m doing OK.”

This could be taken that you have had your ups and downs (like most people) and are generally just cruising along. What’s really going through your head is that you actually feel OK at this moment. If they were to ask you again 20 minutes after enduring standing at this party and making small talk, your answer may be the same; yet, by this stage you are holding yourself up against the wall, missing every second sentence spoken to you and really by now just want to be home in bed.

3. “Actually, I feel like I have been hit by a truck!”

Here you have chosen to lay all your cards on the table. You do feel like you have been hit by a truck. Everything hurts and you are struggling to function. Just be prepared for the person you are speaking with to think you are a hypochondriac and watch them try to escape the conversation as fast as possible.

Sadly, there appears to be no middle ground. However, if the conversation has survived the first stage of “How are you?” and has moved on to “What do you do?” how do you respond?

1. “I am a (insert your profession).”

Hope the follow-up questions don’t require you to disclose your omission that you haven’t worked in over a year due to your health. Redirect to talking about the other person as soon as possible!

2. “I am currently taking a period of leave from ____, to focus on other things.”

Again, redirect as soon as possible — people love talking about themselves!

3. “I do nothing! I am sitting around milking my government disability pension for all it’s worth.”

Please note that this answer may result in funny looks and a quick exit from the conversation.

4. “I am a lady of leisure.”

Leave it at that and the air of mystery that surrounds you.

5. “I am a professional patient. I have ____ (insert chronic illness) and I spend my time looking after myself, managing multiple appointments and specialists and navigating the mess that is our health care system and government support services.”

This is my preferred answer. However, once the chronic illness has been revealed, be prepared for the barrage of “advice:”

  • “My great aunt had that. She was healed by ____ (insert drug/food/exercise/specialist of choice!)”
  • “Have you tried ____ diet. I hear that is good for tiredness.”
  • “I know a great alternative ____ (insert health care practitioner of choice)”
  • “I get tired all the time, too!”

And with that, you smile sweetly, grit your teeth and make a choice: either exert your remaining energy for the evening on educating that individual about your illness with as much grace as you can muster, or excuse yourself and head to the bar knowing this is going to be one very long night!

Follow this journey at Make It Bake It Fake It.

The Mighty is asking the following: Create a list-style story about the holiday season related to disability, disease or mental illness. It can be lighthearted or more serious — whatever inspires you. Be sure to include an intro for your list. 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.

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When You're Too Scared to Use Your Disability Parking Permit

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I received a disability parking permit this week… but I’m currently too scared to use it.

Too scared to face the condemning looks as I step out of the car and walk without visible impairment into the shops.

Too scared to hear the words, “But you are not disabled!” shouted across the parking lot.

Too scared to return to my car to see an angry note shoved on the windshield: “Leave the spots for someone who actually needs them.”

The many stories making the news this week of others facing the same issue aren’t helping me feel any more confident about accessing these parking spaces.

See, I have an invisible illness. A chronic illness that’s not apparent by looking at me, the 30-something, well-presented woman standing in front of you. Yet, I have a very real, very debilitating and crippling disease. You could walk past me and not have a clue about what’s going on inside my body, I look no different than the person next to me. However, I have a body where breathing is exhausting and the pain is constant. A body that doesn’t allow me to leave the house or my bed on a regular basis. There is nothing imaginary about my illness. Three years of debilitating symptoms are proof of this. It may be invisible, yet it is quite real.

disability parking permit

One of the different requirements of the permit I received is that you are detrimentally physically affected by walking 100 meters.

100 meters.

I am ashamed and embarrassed that my life has been so hugely affected by 100 meters. Three years ago I was training for a half marathon. These days, 100 meters is torture and has day-long repercussions.

100 meters.

If I do make it out of the house, I am the woman praying fervently for a parking spot as I do laps around the car park. “Please God, let there be a close spot today. I don’t have the energy or the pain levels to have to walk from the back of the parking lot.” I am the woman who had long outsourced my supermarket shopping. I am the woman whose last attempt to try clothes on in Target left me in bed for a week… and I didn’t even walk away with a new dress! I am the woman attempting to attend three to four appointments a week to manage my disease. I am the woman whose only achievement in a day is making it to that appointment.

Take for example my physiotherapy appointments. These are located one suburb over, at most a five-minute drive. Yet the parking situation is so atrocious in this suburb that I need to leave 20 minutes before the appointment, take five minutes to get there and spend 10 minutes driving laps around the suburb trying to find any parking spot. When I do find a spot, I have to make sure I have five minutes to walk over 400 meters to the clinic. Then I have a 30-minute appointment that requires both physical and cognitive energy, and then I need to make the walk back to the car. The toll this takes on my body leaves me in bed for the rest of the day. If I could access one of the disabled parking spaces closer to the clinic, this might mean I have enough energy to make and eat my lunch when I get home, or not max out my pain medications for the day.

Then I wonder about the other benefits of accessing these parking spaces. Maybe I could make it to the pharmacy to pick up my medication without it being my only outing of the day and leaving me doubled over in pain? Maybe I might be able to make it to the beach, or the movies or out for dinner and actually be able to enjoy being out of the house instead of worrying about how far away I’m going to need to park and how much of my limited energy it might use? Maybe I will be able to reclaim some of my independence, not needing to rely on someone else to drive me just so they can drop me at the door? Maybe it might be OK?

Yet, why am I so scared?

Is there such large scale abuse of these parking spaces from those who don’t meet the requirements to park there? Is there that much of a misunderstanding of disability and illness? Is there a culture of mistrust of medical and government organizations that make the decisions to approve these permits?

Why do people receive such abuse for parking in a space they have both medical and governmental approval to park in?

I would honestly give anything not to need to park in one of these spots.

I hope and pray that as I begin to use my permit, there will be enough compassion and understanding for me to be able to access the 100 meters my body will allow. I live with enough personal shame and embarrassment about how my body has left me; I hope I won’t have more of it inflicted on me by others.

Follow this journey on Make It Bake It Fake It.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? 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 Share Your Story page for more about our submission guidelines.

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