23 Things People Don’t Realize You’re Doing Because You Have Chronic Fatigue

To an outsider, things like taking the elevator instead of a flight of stairs or turning down party invitations might look like a reflection of your personality. But to a person with chronic fatigue, these can be coping methods that are essential to getting through the day.

We asked our chronic illness community on Facebook to share what things they do that others may not realize is because of their chronic fatigue. Their answers reveal the adjustments that often must be made in everyday life to save energy, and that healthy people may not realize how much of a difference these strategies make.

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Here’s what our community told us:

1. “Make sure I have a ‘buffer day’ in between any exhaustive event and resuming life.”

2. “Wearing PJs most of the day if I’m not going out. Some days it’s too painful to move and I can’t do simple chores around house. It’s embarrassing at times. I feel bad.”

3. “Planning my showers. I made a comment at Christmas about how I wish our shower downstairs worked because most days I’d like to get take a quick shower but I don’t want to climb the stairs. My husband’s sister’s boyfriend said, ‘Wow, you’re so lazy.’ I was seeing red at that moment and it literally took every bit of willpower to not lash out at him.”

4. “I have to plan everything based on what I need to get done and how much energy it’s going to take out of me.”

5. “I lean literally all the time. On walls, on tables, on people, on carts. I get panicky if there isn’t something to support myself on.”

6. “I micromanage every single aspect and moment of every day to determine what I can and can’t do and figure out how to get things done. This in itself is exhausting.”

7. “I don’t invite people to my house. It’s always a mess and I feel bad about that because I just don’t have energy to keep it tidy. I wear PJs all day every day unless I absolutely have to go out. My home is my refuge from the business of the world. The one place I feel comfortable.”

8. “People didn’t realize that at 25 to 33 years old my dad drove me places a lot because I had brain fog from chronic fatigue.”

9. “Finding a quiet room at work to close my eyes and rest in the middle of the day. Sometimes, just being away from people for a few moments allows me to recharge just enough to push through.”

10. “Exercise. It sounds counter-intuitive but if I don’t my symptoms get worse. So you stretch through the pain and push just the right amount.”

11. “Curling up under a mountain of blankets. The weight comforts me and makes me feel grounded. It stops the spasms that rock my body as well.”

12. “People often compliment me when I wear one of my wide headbands. Sometimes I let them in on the secret and say, ‘Thanks so much! It’s because I’ve been too tired to wash my hair so I’m covering it.’”

13. “Always wearing comfortable, non-restrictive clothes so at any given time I can lay down for a bit when it gets too bad.”

14. “I have myasthenia gravis and it can make chewing and swallowing difficult to impossible. In the evening, when I’m most fatigued, I often can’t finish my dinner. Waitresses insist on asking multiple times why I didn’t finish. It’s actually very intrusive. I should only have to answer yes or no to ‘Can I take your plate,’ without an explanation!”

15. “I spend a lot of time counting steps. For example, at the movies I know exactly how far the bathrooms and exits are. I’m not going to be the first out but I bet you I’ll make it!”

16. “Keeping my hair short. It’s out of practicality. Less hair to manage, brush, and wash saves valuable energy.”

17. “Ignoring texts or phone calls because of severe cognitive difficulties and/or too tired to type or talk.”

18. “I eat microwavable food so I can eat instead of leaving half cooked food all over. I burn food from forgetting it on the stove or end up dropping it on the ground by accident.”

19. “It’s sometimes hard to explain to friends and coworkers why I take the bus two stops instead of just walking, or take a taxi when I could take the subway (all those stairs!)”

20. “I always got anxious about the invites to parties across town and the offer to just ‘crash on the couch.’ I’d usually go and just not drink. Not because I didn’t want to ‘party,’ but because I knew I wouldn’t sleep on a couch because I have such a hard time sleeping and because even one drink would make me feel horrible. Always got ‘party foul,’ ‘Stop being a drag,’ ‘Just one shot’ — Nope. A night out would equal about two days down.”

21. “Wringing my hands and wiggling my legs or rocking back and forth. I look like I’m rubbing lotion on my hands all the time but really I’m trying to ease some of the pain through my own body heat.”

22. “I always have to get a carriage at the market even if I’m only getting a few things — I need it for support or by the end of the trip I’ll barely be able to get to my car — the worst part is just standing in line to cash out! That can actually ruin a ‘good’ day.”

23. “I don’t leave my house on Mondays. I frequently overdo it on the weekends with family and friends. So I need a day for recovery — I don’t open the blinds, I don’t answer the door, I unplug/turn off the phones, and stay in bed resting until I get up to make dinner.”

What things do you do that people don’t realize you’re doing because of your chronic fatigue? Share in the comments below.

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