When you stay home from work or don’t have a job because of your chronic illness, it’s hardly a vacation. More than likely, your symptoms are flaring to the point where you physically can’t work, and you’re spending the day dealing with pain and fatigue, not having fun. But to outsiders who have only experienced illnesses that get better after a couple days, not working due to a chronic illness may (wrongly) seem confusing or unnecessary (especially to those who claim you “don’t look sick”), leading to hurtful comments that it “must be nice” to stay home.
We asked our Mighty community to share the lies people tend to believe about staying home from work or not working because of a chronic illness, and the truth about what it’s really like. It’s just not true that people with chronic illness are off enjoying a little vacation. Next time your co-worker or friend is out sick or not working, remember that they need support, not judgment.
Here’s what our community told us:
1. “People seem to think it’s a holiday and that I’m lazing about enjoying myself, but in reality I’m tired and in pain and/or feeling sick. All I want is to be able to go back to work and be a productive member of society. Living like this is not anywhere close to a holiday.”
2. “People think I’m cooking or cleaning when it really takes all my strength to get up to go pee or get a glass of water.”
3. “[Co-workers think] waking up any time after 8 is a ‘sleep in’ when in reality it’s never enough sleep. When I say I got up at 10 a..m. or 1 p.m. to shower and they call it a ‘lazy day’ when in reality it’s a regular, difficult and far-from-lazy day. I can actually remember exactly where I was and when it was the last time I woke from sleep feeling like I used to before I got sick (energetic and well rested) because it’s only happened once in the last five years.”
4. “[People think] I cancel appointments or call in to work flippantly, secure in my own sense of entitlement. Instead, I experience crushing guilt and spiraling anxiety when I’m least able physically and emotionally to deal with it.”
5. “We aren’t ‘resting’ when we are in bed. When the body is under attack it is fighting to survive, there is no ‘resting’ involved!”
6. “I hear, ‘I’m so glad you got a day to relax. I bet you feel better.’ Nope, I don’t. I just needed the day to continue surviving. Because, I just couldn’t.”
7. “I’ve been asked: ‘Why can you still go on a vacation but you can’t work?’ Or ‘You look just fine on Facebook’… as if because I can’t work, I should never be allowed to enjoy myself, ever!”
8. “You’re over-exaggerating your condition. My last manager seemed to think I could work from home even in a bad flare. I have Crohn’s disease and rheumatoid arthritis. When both flare I can’t even dress myself! I cannot get up and down stairs and end up bed-bound in agony. When they see me in the office I look ‘fine,’ I just have a bit of a limp. Yeah, because at that point I’m having a better day with my health. What they don’t understand is how much effort it takes to get into the office.”
9. “I think a misconception is that a sick day is a day of rest when it’s really a day of struggling endlessly to find any sort of bearable way to relieve symptoms.”
10. “[People think] if you looked fine yesterday and return to the office ‘normal,’ then you weren’t really that sick to begin with. They don’t understand that if they felt like we do on our ‘normal’ days, they’d probably never make it into work.”
11. “I get frustrated when people say they work because they cannot afford not to, but it’s not always a choice of finances over pain/illness. Every time I tried to return to work I was told no.”
12. “Often people seem to equate work absence due to chronic illness with work absence due to acute and temporary illness (even something as simple as a cold). They believe it’s an experience with discrete boundaries and a definitive recovery signaled by the ability to return to work. In reality it is a constant series of negotiations and sacrifices.”
13. “People mostly comment on how I’m not working, or ‘skipping’ things, like I’m picking and choosing and using being sick as an excuse. But they don’t realize how frustrating and sad it is to miss all of those things, as well as the outings or opportunities I miss that they don’t see.”
14. “[People think] it’s fun. It’s really not fun to stay home and be unable to work! I’m not having fun, I’m often in bed in a lot of pain. I’d love to be able to work!”
15. “People think we have less to do. Managing the eight-plus specialists, therapies (physical and psychological) family and home is so much work. Also diets and trying to find answers is a lot of work. Also everyday activities take accommodations and three times as long at times.”
What lies do people believe about not working due to a chronic illness? Share in the comments below.