17 Secrets of People Who Live With Chronic Fatigue Syndrome


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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