20 of the Most Exhausting Effects of Chronic Illness
“Exhausted” and “tired” often take on new meanings when you’re chronically ill. It’s not the kind of tiredness that can be “fixed” by a spending a night in; it’s a tiredness that can make it difficult to concentrate, have a conversation, and spend any energy. And “not getting enough sleep” isn’t necessarily the cause.
We asked our Mighty community to share some of the most exhausting parts of their illness. In case you need some reassurance today, know you’re completely justified in being exhausted after dealing with these aspects of your illness, and it’s OK to take the time you need to rest when your health condition leaves you feeling drained. And check out the end of this post for advice from the community on coping with the difficult days of your illness.
Here’s what our community told us:
1. “Being exhausted after a night’s sleep is exhausting! When your brain is ready for the day and has loads of energy but your body wants to be asleep and rest all day even though you have things to do. The fear of people thinking you’re just being lazy is also exhausting.”
2. “Loss of focus, concentration, work and or school that piles up when you’re away sick. It’s inevitable and tiring just in itself to think about!”
3. “Not being able to be spontaneous anymore. Everything needs to be planned well in advance, and if I’m going out in the evening, I need to prepare all day. Even then there’s a chance I’ll quickly run out of spoons. I also dread going out, even though I really want to.”
4. “The lack of understanding from others can become incredibly isolating. Withdrawing from your social network just seems like the easier option in the end.”
5. “It’s exhausting learning to be a different version of yourself while having the expectations of who you used to be…”
6. “I never feel fully rested. People tell me all the time, ‘I understand how you feel, I didn’t sleep well last night either.’ Usually they will sleep well tonight. On the other hand, I’ve not had a good night sleep in so many years that I don’t remember the last time.”
7. “Not just the pain and fatigue but the underlying effects you are never prepared for. The depression that comes from fighting all the time, the sadness that comes when you realize those closest to you will never understand. My best does not always look the same… some days I am a rockstar and the next I barely get a shower. No one understands! And that is exhausting!”
8. “Being expected to go through the day like a ‘normal’ person. Working a full-time job, going to school, being social. People don’t seem to understand that I run out of energy quickly and it is so important for me allocate the little energy I do have beneficially. They get offended if I don’t want to go out after work. I’m too tired.”
9. “The multiple symptoms that arise because of the depth of the illness is exhausting. When your body cannot take one more minute of standing, sitting, walking, laying down, what are the options? I will get totally exhausted, but will not give up or give in.”
10. “Knowing how hard my illness is on my boyfriend. He often gets what’s leftover of me after work. It’s draining constantly explaining that I’m tired without a cause and it’s hard for him to understand how I can be tired at 8 p.m. when I slept until 9 a.m. and all we did was watch TV all day…”
11. “People don’t realize that even lower level pain wears you down when it’s constant. Day in, day out, it takes a huge toll, and that’s not even counting the myriad of other symptoms.”
12. “The most painful and exhausting effects of chronic illness is the letting people down part… I hate it. My physical pain keeps me from following through with plans. It keeps me from being able to do and be more for the people I love the most.”
13. “Appointments! Truly, sometimes I’m impressed with myself and the fact that I can keep track of so many doctor visits, insurance phone calls, tests, regular lab work, prescriptions, picking up said prescriptions, paperwork, etc. It’s exhausting and draining. There have been days where I’ve had three appointments and then all I want to do is go home, shut the door, and sit in quiet so I can just be and not focus on my health, or lack thereof.”
14. “Fighting my own body just to be an active mom for my son. To play with him, to take him to the park, to volunteer in his preschool, etc. It is so hard and a lot of guilt.”
15. “Explaining it to everyone over and over and over again but never really getting the help and understanding you want and need.”
16. “The pain. The pain is never-ending and only causes more issues. Pain causes fatigue. Fatigue causes a lowered immune system. A lower immune system causes more illness. More illness causes more pain. Sometimes I’m sitting in class, and the pain will completely take my breath away.”
17. “Other chronically ill people treating illness like a competition. Especially in support groups online. From how many diseases or conditions they have, to how many medications they take. Being ill is not a competition, you’re not going to get a medal for being more sick than anyone else and you can’t compare anyone else’s journey to your own.”
18. “It’s exhausting to try to keep a positive attitude all the time. Even when things are really tough I still try to stay positive. However being positive when you are in loads of pain is exhausting.”
19. “Before my illness if I felt overwhelmed or run down and needed to recharge, I could take a break, take a day off work, or take a vacation. There are no breaks from chronic illness. There are no days off from chronic illness. There are no vacations from chronic illness.”
20. “I think one of the most exhausting effects of being chronically ill stems from ‘acting normal.’ I spend so much time putting on my brave/fake face to hide how I really feel, that it almost becomes an unnecessary side effect.”
Check out these resources from the community for coping with the tough days of your illness:
15 Things I Do to Keep Smiling on Bad Days of Chronic Illness
Coping With the Coexistence of Depression and Chronic Illness
16 Ways to Get Through Days When It Feels Like Your Illness Is ‘Winning’
Erin is the former senior editor and chronic illness editor of The Mighty. She joined The Mighty in 2015 and previously worked at Inside Weddings magazine, Mic, and The Huffington Post. She was also the features editor at The California Aggie, UC Davis' student newspaper. She is honored to be a part of the Mighty community!
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