The Mighty Logo

5 Ways to Craft the Perfect To-Do List When You're Chronically Ill

The most helpful emails in health
Browse our free newsletters

How many times have you written a to-do list this week?

How many times have you looked at this list and felt like it’s an impossible dream?

How many times have you felt useless because you’ve only ticked off a few items?

How many times have you looked at the list and felt like it’s been taunting you and trying to coax you into doing more than you’re physically able?

How many times has the list been thrown in the rubbish in disgust and despair?

OK, enough questions. Let’s deal with this to-do list issue.

Firstly, I do need to ask one more question.

Why? Why do we do this to ourselves?

When we live with chronic illness and rare disease, pacing should be our greatest priority. It’s one of our key chronic illness management tools.

As soon as we add item after item to a to-do list, we start placing undue pressure on ourselves. We set ourselves up for failure.

I’m a bit of a “professional” list-maker. I always have been since I was a primary school student. My career in management did nothing to hinder my list-making passion. In fact, it was one of the keys to my success.

So, you can imagine how difficult it was suddenly finding myself in a situation where I have a rare disease that is as unpredictable (and sometimes even more) as the weather.

I can’t tell from one day to the next if I’ll be able to sit up for two hours straight, let alone achieve a list with three items on it.

Something I love to do and is considered a good life discipline is now something that can quickly become my undoing.

So, “to do or not to do?” That is definitely the question.

Despite the risk of failure, I still say, “to do.”

A list helps you keep tasks on track and can be a powerful organizational tool.

There is a big “however” coming now.

For those of us with chronic illness, we need to be realistic about our capabilities. We need to ensure we don’t do anything that will further compromise our health.

This is actually where a to-do list has advantages for us if we use it correctly.

So here’s a few of my tips for making a list work with your chronic illness, rather than against it:

1. It doesn’t have to be huge. It can have only one item on it per day. Make it something you really want to achieve. If at the end of the day you can cross off that one item, you will get a wonderful feeling of accomplishment.

2. Use your phone calendar. My to-do list is on the agenda display in my phone calendar. It makes it easy to juggle tasks around and I can quickly see each morning what I want to achieve and what I need to achieve.

3. Needs versus wants. I like to itemize the things I really need to do (ex: appointments, cleaning tasks, online food shop, rest time) versus what I want to do (write a blog, sort out wardrobe). This way I can ensure I’m prioritizing my pacing for the important tasks. If I find I’m having a better health day, I can go ahead and do a “want” task. Note: I included rest time as a “need-to-do.” This is so important to physically add to your to-do list daily. Self-care is essential if you want to have a hope of achieving anything else.

4. “Want-to-do list days” are important. It can’t all be about what you have to do. Some days just need to be about fun and doing things you love. For me, that’s writing. It’s something I can do with my physical disability and it’s really important to me. So I make sure I always factor in this want around the tasks I need to do.

5. Remember, you’re the to-do list author. At the end of the day, this is your personal list. You can add and delete items as you like. You’re the author — no one else, apart from maybe your medical team who can sometimes dictate appointment times. If you decide to change the story for the day because the “plot” needs a re-think, go right ahead. Don’t feel guilty about it either. Listen to your body. Be guided by it.

We need to make life as pleasant and as easy as possible for ourselves. Let’s face it, most days are a physical battle with pain and fatigue and a myriad of other symptoms. Why on earth would we choose to make it any harder with impossible lists?

Make a list. Make it short. Make it fun, and take great glee in ticking off an item.

Remember to celebrate each time you strike an item off a list. Even if the list only had one item, you should still throw a little party.

You did it! What an achievement. I hope you’re smiling as I’m smiling for you.

To do, or not do to?

I say, “to do,” one item, and one day at a time.

a to-do list on a notebook

Originally published: April 27, 2018
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home