Community Views: What Lupus Fatigue Feels Like
Last updated: April 2023
Fatigue is an intense feeling that many people do not fully understand until they are living with it. Fatigue is very different from just feeling tired. When we are tired, we can take a nap, go to bed early, sleep in, take a day off of work or chores, or otherwise catch up on rest.
With fatigue, especially the fatigue that comes with lupus, there is no such thing as catching up on sleep and feeling refreshed.
To learn more about the experiences of our community members, we reached out to followers of our Facebook page. We asked you to tell us:
“What does lupus fatigue feel like?”
Nearly 100 people with lupus responded. Here is what was shared.
I feel heavy and weighed down
The most common response given is that people feel fatigue as a heaviness. It feels like there is a weight constantly pushing down on part of them or on their entire body. With that degree of heaviness, it is much harder to find the energy to move and get things done.
“My body feeling heavier across the midsection while I am sleeping.”
“A ton of bricks holding you down!”
“A really heavy blanket.”
“Total weighed down heaviness.”
“My body feeling heavier than I can carry.”
I feel drained
Some people shared that it feels as though they have been drained of all their energy. A few explained it as feeling like their life force has leaked out and that they can even feel it as it leaves their body. After that, they know they do not have any energy to give to others or even themselves. When our battery level is at zero, it is hard to do much of anything.
“Being drained of every ounce of blood in your body. Kind of feeling like a dishrag.”
“I do not have anything else to give.”
It feels like my mind is in slow motion
For others, the fatigue affects their mental abilities. They describe it as a brain fog that takes over their mind, limiting their ability to think quickly and solve even simple problems in their day-to-day lives.
“Inability to function properly mentally.”
“My mind is out of focus.”
Physically, I cannot function
Others shared that the fatigue of lupus hinders their physical abilities. They cannot rally the energy to complete what were once simple, easy tasks. Now, activities like going to the grocery store or even walking feel overwhelmingly taxing.
“I cannot function, walk, or do anything but just lay there.”
“I am in slow motion.”
Lupus fatigue feels endless
Many in the community also mentioned that one of the hardest parts of lupus fatigue is that it is ongoing. This heavy feeling is a constant presence, never letting up long enough to have a real break. For some, fatigue has been present for so long that it is hard to recall what it felt like before their journey with lupus began.
“It is an everyday occurrence.”
“It is normal for me now.”
Thank you to everyone who responded to the question. We appreciate hearing from so many and your willingness to share.
How are you most likely to respond when someone offers you unsolicited advice about your lupus?