19 Things You Know to Be True When You Have Chronic Fatigue Syndrome

It’s difficult to truly understand what chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is like unless you live with it yourself. Within the CFS/ME community, you’ll find millions of people who completely understand the unique frustration of not having the energy to shower, and can empathize with the fact that “just get more sleep” isn’t very helpful advice.

We asked our Mighty readers with CFS/ME to share the truths you’ll understand if you live with the condition, too. If you can relate to these, know there’s an entire community out there of people who know firsthand what you’re going through.

Here’s what the community told us:

1. “‘I’m exhausted’ isn’t an exaggeration. It’s legitimate exhaustion to the point of nausea and shaking. A nap won’t fix it.”

2. “I’m not lazy. I’m constantly in a fog I can’t escape from. It doesn’t even matter how many hours of sleep I get, I never wake up feeling fully rested.”

3. “It isn’t our fault that we don’t have the energy to do the same things you do… And no, sleep will not help!”

4. “Taking a shower can be an absolutely exhausting endeavor.”

5. “Fatigue and being tired are two completely different things. Healthy people usually think they’re the same. I’ve often talked about being really fatigued and gotten the response, “Yeah, I’m really tired, too.”

6. “The disoriented sensation of physically being somewhere but mentally being up in the clouds because you’re just that tired.”

7. “It’s easier to eat something while standing in front of the refrigerator because walking across the kitchen and collecting proper dishes and actually heating something is too exhausting to even fathom doing.”

8. “Guilt – there is always that feeling of ‘I should be doing —’”

9. “The name is completely inappropriate. ‘Feverish, sweaty, palpitations, dizzy, feel like boiled over crap, exhausted, allergic to everything, insomnia city, weak-as-a-kitten, inflammation town, bla bla bla disease”… Is there an acronym for that?”

10. “Netflix saves lives.”

11. “The concept of ‘pushing past/pushing through’ your limitations no longer applies to you. Our bodies don’t work that way.”

12. “The frustration that comes with random people messaging you trying to sell you a vastly overpriced vitamin supplement with the promise to cure you because it ‘cured’ their *insert relative here* of their chronic fatigue.”

13. “How happy you are with only one small accomplishment each day that to others would seem trivial.”

14. “Just because I can find the little spark in me to do the things I love doesn’t make it any easier. It just means days of downtime to repair my body from all the energy I used trying to be fulfilled and happy.”

15. “It isn’t all in our minds, despite what people may think.”

16. “Some days it feels like I am walking through wet sand up to my hips and I have concrete blocks on my arms and legs! It is not a ‘tired’ thing, it’s a pure and total exhaustion!”

17. “Anything is a lean-able surface if you try hard enough.”

18. “I am not ‘lucky’ to nap during the day. If you think that I am, you don’t understand chronic fatigue.”

19. “Having energy and stamina is not a matter of will. If we could will ourselves to feel better we most certainly would. Just like you cannot will away a flu or a headache, we cannot will away CFS/ME. And trust us… we have tried!”

If you have CFS/ME, what’s one thing you know to be true? Share in the comments below.