14 Aspects of Chronic Illness We're Not 'Lucky' to Experience
Picture it: You’re tossing and turning on your couch in the middle of the day, unable to get comfortable because of the excruciating pain jolting through your body. The debilitating fatigue makes your limbs feel like they’re made of concrete, and you’re too exhausted to do anything besides breathe. Maybe nausea, vertigo, heart palpitations, incontinence or any number of other symptoms are adding to your pain and discomfort.
Suddenly, you get a text from your friend: “Ugh, going to be stuck late at the office again. You’re so lucky you get to stay home all day!”
“Lucky” probably doesn’t feel like the right word, does it?
Though many of our healthy friends and loved ones typically mean well, off-handed comments like this can still hurt. When someone says a person with chronic illness is “lucky,” it’s likely they haven’t thought through the full reality of the situation.
In the example above, the friend might be stressed from working long hours at her job and dream of having a few days at home to relax — which is completely valid! However, it’s important to consider that for a person with chronic illness, staying home all day to manage symptoms isn’t relaxing, or a vacation. It’s often a necessity and many may wish they were able to work.
Being told you are “lucky” can feel invalidating, as it trivializes the very real challenges people with chronic illness face on a daily basis. To help others better understand this reality, we asked our Mighty community to share an aspect of chronic illness that makes people say, “You’re so lucky!” — and why that couldn’t be further from the truth. Let’s show our chronically ill loved ones the support and understanding they deserve.
Here’s what our community shared with us:
1. Not Having to Pay Taxes
“When people learn that I don’t have to file or pay taxes, they get really jealous. Since my only income is disability (SSDI), which is tax-free, and I have no savings accounts — or anything of financial value that earns interest — I have no reason to file taxes every year. By the way, I had this verified by H&R Block. I would much, much rather be out there working, even part-time, earning money and contributing to society, even if it meant filing taxes every year. I have no problem whatsoever ‘rendering unto Caesar’ what is due to there.” — Sherry W.
2. Being Exempt From Gym Class
“Getting exempt from gym class because I couldn’t see the ball and couldn’t participate in a safe way. It was awful to be excluded.” — Jessi
3. ‘Getting’ to Leave Work Early
“There were many days when I could still work that I had to leave earlier than my assigned work hours. Between migraines and endometriosis with IBS-D I never knew if I would make it through a whole week. I remember a co-worker or two saying in earshot how nice it must be to just leave whenever I wanted. One particularly bad day when everything was flaring I was throwing up from pain and and passed out on the bathroom floor. I ended up being taken to the hospital and found out later I had an ovarian cyst that ruptured. When the EMS was wheeling me out past one of those co-workers I said, ‘Yes, I am so damn lucky to leave work early whenever I want, wanna trade?’ She put her head down and never said anything else to me the rest of the time I worked there.” — behindthemask
4. Losing Weight Because of Your Illness
“I think it’s crazy when people tell me that I am so lucky to be so skinny. I hasten to tell them that I am unable to digest food properly due to chronic pancreatitis. Then I have to explain patiently why that’s not a good thing. And then they still don’t get it.” — califdweller
5. Receiving Accommodations
“I was diagnosed with fibromyalgia at 15 years old, about halfway through grade 10. I remember getting really upset when my friends would make the hurtful, ‘you’re so lucky’ comments when I’d pull out the key to the school elevator so that I could attend my science class (located conveniently on the third floor). If only it were luck. I can hardly tolerate the noisy and overpopulated hallways without arriving to class in tears from either the physical pain of having climbed six flights of stairs or stimuli overload from 5,000 students’ competing voices. My disability is not a thing to consider lucky.” — Erica B.
6. Being Unable to Work
“I had to give up work after 17 years due to my chronic pain. When people think I am lucky I don’t have to work, I feel upset and angry. I would give anything to wake up in the morning and know what I was going to do that day without pain being an issue. I believe other people only truly understand when they have had a similar experience.” — Kimberley F.
“‘You’re so lucky — that you don’t have to work.’ That’s right, thanks! I just lay on the sofa eating chocolates and reading novels. We know those of us who ‘can’t work’ find managing our illnesses a full-time job on the best of days. There are also days where I can’t even get out to go to the doctor or pick up prescriptions.” — Denise C.
7. Missing School
“People think I’m lucky that I can stay home from school. They think it’s fun to not go and have a reduced workload. What they don’t realize is that I’m in immense amounts of pain and being left out of everything is really hard.” — Liz G.
“I miss school a lot for doctor appointments, flare days and surgeries, and people, in an effort to make me feel better, just say, ‘Wow, it must be nice not having to go to school.’ It’s frustrating because I would love to be able to go to school instead of sitting around in a hospital all the time.” — Maddie F.
8. Staying Home All Day
“I get a lot of people saying how lucky I am not to have to go out every day and that it must be nice to stay at home as much as I want to if I want to. No it’s not lucky and it’s not nice to stay at home as much as I want, I’d rather be out doing things they consider to be normal everyday things, but I have to prepare myself for days that I go out and make the most of my time when I am out.” — Christine R.
“‘You’re so lucky you get to stay home all day.’ I stay home all day because I’m unable to go out much at all. The sun burns my eyes, the florescent lights in stores make me sick and I need to rest after taking a shower to get ready to go out. Yes, I’m the lucky one.” — sarajtree
9. Needing to Frequently Cancel Plans
“Some have told me I’m lucky because I can cancel plans whenever I feel like it. How is that lucky? I want to keep my plans. I made them for a reason. Instead, I miss out on the fun I had planned and feel guilty for letting my friends and family down.” — megnificent1
10. Having Lots of ‘Free Time’
“I was forced to take a medical leave for chronic migraines. People commented that it ‘must be nice to have so much free time.’ Others treated me like I was on vacation. They didn’t realize the extent of the pain, anxiety, loneliness and isolation, not to mention the loss of pay and impact on my job.” — Lindsay S.
“I’ve heard, ‘You’re so lucky to have lots of free time! You can do whatever you want…’ Reality is, just because I’m not working doesn’t mean I have lots of free time. I spend 12-14 hours a day sleeping. And when I’m awake I’m doing daily tasks like showering or eating breakfast with long rest breaks in between. On top of that I can rarely do what I want. My body dictates my limits. If I feel like going for a walk, too bad, I can’t. Fatigue and pain prevent me from waking. If I feel like reading a book, oops I can’t, my eyes won’t focus and my brain fog won’t let me understand the words.” — Rinori N.
11. Using a Wheelchair
“I’ve had people tell me they envy my wheelchair because they hate walking.” — Bridget N.
12. Being on Disability
“I’ll hear often how lucky I am to not have to work and still get paid because I’m on disability. What they don’t consider is that I now make half of what I was making before. And since my chronic pain disability is not always visible to the eye, they assume that I am still doing the same things that I did before. They don’t realize that half my time is spent in bed or on the couch unable to move. It’s very disheartening to me when people make the wrong assumptions about me. I wish they could understand more!” — jbelda63
13. Having a Flexible Work Schedule
“When I had an accommodation for flexible schedule for chronic migraine, a coworker remarked, ‘It must be nice to come in at 11 a.m.’ I explained the reasoning and to his credit, he apologized.” — Lindsay S.
14. Spending All Day in Bed
“When I’m not being told it’s just an excuse to stay home … I’m being told I’m lucky to be able to spend all day in bed. … They don’t realize that’s the only place I can be somewhat comfortable. The pain eases ever so slightly with the disbursement of pressure. I’m never not in pain though.” — Libby F.
If you’ve been told you’re “lucky” to experience a certain aspect of chronic illness, you’re not alone. Your experiences and emotions are valid, and there’s a community here that understands what you’re going through.
To read more about life with a chronic illness or disability, check out the following stories from our community:
Photo by pawel szvmanski on Unsplash