4 Reasons Why I'm Not 'So Lucky' to Live the Chronically Ill Life


Although I believe that these things are said in good nature, people often comment on being envious of different aspects of my new life, and these things, to anyone in my shoes, come off as quite ignorant. These are on the same level of frustration as platitudes for any of us living with a chronic illness. We roll our eyes at them, but really they become quite exasperating after a while. It makes me wonder what people really think I do with my day.

I’m sure we’ve all seen this meme that was really popular a few years ago:

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I don’t actually spend my entire day flopped on the couch, eating popcorn and loving a lazy life. Here are a few of the comments I’ve received over the last couple years about what makes people covet that I live the chronically ill life and they do not.

1. “You’re so lucky that you get the perfect mix of calories and vitamins! How convenient!”

I wonder if when people say this they realize why I need an IV bag with all my nutrition in it. I’m missing an entire organ. A very large one at that. I have to now spend 12 hours a night, five nights a week, attached to an IV bag. Yes, I get my vitamins and calories. No, I don’t have to worry about eating the perfect diet. But this really isn’t something to want. It baffles me that people would actually seek these out. It’s really not something to want. Eat right, stay hydrated, and for the love of all that is good and holy, be thankful you have control over your own nutrition!

2. “You’re so lucky that you don’t gain weight!”

I miss working out. I miss being able to eat anything without any significant consequences. I wish I could go back to watching what I ate. You’re right, I don’t gain weight from eating. But the issues I have from eating literally anything and everything are quite brutal. If I don’t want to have those consequences (and I’m hoping that you’re all smart enough to figure out what the consequences of eating food without a small intestine does to your… uh… visits to the lavatory) I have to go without eating anything. Those are my two choices. Chronic diarrhea (there I said it!) or not eating… What would you choose? You may say it’s an easy decision until you’re faced with it in real life.

3. “I wish I could Netflix and Chill all day and not go to work.”

OK, I’ll admit, before I was sick, I would’ve thought this was awesome as well. But it gets boring really quick. For the first 10 months of being sick, I didn’t even have the energy to read. So literally, all I could do was watch TV. My brain was fried. I miss working. I had an amazing community of colleagues where I worked and I really miss those friendships. I now take care of my daughter, which I do love doing! And if asked what I do, I now say I’m a stay-at-home mom, which I wear that title with pride. But I didn’t willingly step down from my position. This decision was forced on me. Hopefully, one day, maybe, I’ll go back to work, but as of right now it’s not even a possibility. So watching my daughter from the couch, while I read or watch Netflix, is my current job. That and being chronically ill; it really is a full-time job. Trust me.

4. “I would love to be able to sleep nine hours a night!”

Yes, I sleep nine hours a night on a good night, but I literally never, ever, ever feel refreshed in the morning. Ever. And it’s also not like I sleep in — I have a 2-year-old and 2-year-olds love getting up at the crack of dawn. I go to bed early because I am so beyond exhausted after supper that I can’t keep even my eyes open. I also have a lot of nights that I don’t sleep through the night. I often have to get up to go to the bathroom, and although I’m not in the bathroom for this long, I’m usually awake for a good hour — hour and a half when I’m up. Once I’m done in the bathroom, I lay in bed and I can’t calm my brain down. I still replay what’s happened in my mind all the time, and for whatever reason, my brain likes to remind me of my illness, my stresses, and all that goes with this new life at 2 a.m.

I get it — in a perfect world, not working and not gaining weight while eating whatever you want yet still not becoming malnourished all while watching Netflix sounds like a super sweet deal. But when that all comes with chronic fatigue, chronic diarrhea, being hooked up to an IV 12 hours a day, getting awful cramping, etc. etc. — it’s really not all it’s cracked up to be. Be thankful for your health, be thankful for your job, and be thankful for those calories you have to count. Because one day, all of that can just be snatched up from under you and you’ll wish you had all of it again.

You envy my life? A day doesn’t go by that I don’t wish that I had yours.

Follow this journey on A Gut Feeling.

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