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My 'To-Don't' List for People With Chronic Fatigue Syndrome

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I don’t know about you, but when my chronic fatigue syndrome is rearing its ugly head, my to-do list inevitably starts to grow. In these times, it is a struggle to find a balance between my pressing energy crisis and the equally pressing day-to-day tasks of our busy household, and the one thing this mental to-do list is not… is helpful. So, I’ve done myself a favor and created a more useful alternative that I’d like to share with you…

My Chronic Fatigue Syndrome “To-Don’t” List

1. Don’t stress about the to-do list. I’ve discovered an amazing little secret about to-do lists… Nothing happens if you do not check off every item. The house does not explode, the kids go on being kids, my friends still love me, and the world keeps turning. If I don’t happen to attend to this mountain of laundry or that stack of paperwork today, they are still waiting for me tomorrow. Occasionally if I hold out long enough, someone else in the house may even feel the need to help me out! No need to stress.

2. Don’t say yes. Say yes(!) or say no. Anyone experienced in living with chronic fatigue is familiar with the dangers of not pacing yourself, of taking on too many things and leaving too little time for rest. So, here’s a little nugget of a no-brainer… Say no to anything that doesn’t make you want to say an enthusiastic “Yes!” Let’s practice. Would I like to host a murder-mystery party for the in-laws? No, thank you. Attend a Tupperware party with random acquaintances? Um, no. Would I like to dog-sit your three chihuahuas while you holiday in Spain? Sorry. Front-row tickets to Garth Brooks? Hell yea! Of course, saying no isn’t always the easiest, but I’ll put forth the argument that it is much easier than the alternative.

3. Don’t write a script for your life when you are feeling low. I’ve been down this road a few times. My symptoms reach crisis level, and my mind runs away with thoughts like, If I feel like this, I’ll never be able to hold my dream job. I’ll never be the mom I want to be. I won’t be able to manage this project or that issue. I’ll be relegated to only functional activities forever. I’ll never run again. I’ll never be the woman my husband fell in love with. My kids will wonder why their mommy never played with them. I’ll miss out on everything…and on and on. But the reality is I have no idea what the future will look like and even less control over it.

For me, I have found this dialogue in my head to be entirely false at times and certainly never helpful, so when this happens I simply stop myself with the question, “What can I do to help myself feel a little better tomorrow?”

4. Don’t fight your illness. Coddle it. Maybe that sounds like bad advice, but I’m sure there’s some science to back it up. From experience, it seems the more I approach chronic fatigue with metaphorical boxing gloves, declaring I’m going to beat it or do things to spite it, the more I find I suffer. The more effective approach I’ve found is to approach the illness with kiddie gloves — that is, to coddle the crap out of it. If I were speaking to my illness, I might say, “Oh, you want to go to bed at 8 p.m.? Sure!” or “You are blowing a fit about tonight’s PTA commitment? Let’s stay home and watch ‘Call the Midwife,’” or even “Oh, you don’t like caffeine after 5 p.m.? How about wine? No? Popcorn? Nada. Fine. Avocado and quinoa salad it is.” Perhaps that doesn’t sound the most appealing sales pitch, but I promise you the payoff in terms of your health will be well worth it!

Of course your to-don’t list will look a little different than mine, but I do encourage you to make one. That feeling of desperately wanting to tick some tasks off your to-do list when your health is suffering is one every chronic fatigue sufferer is familiar with, and it is one that causes undue stress when you least need it. If you really must satisfy that “ticking” need, at least start with list you have a fair chance at. Good luck!

Follow this journey at The Sisters Cafe.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Getty image by Anna Gorbacheva

Originally published: May 13, 2016
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